› Forums › General Melanoma Community › Stage IV, finished dose 3 of 4 of IPI
- This topic has 18 replies, 4 voices, and was last updated 11 years, 1 month ago by
atcchris.
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- March 25, 2013 at 2:20 pm
Hi All,
Originally diagnosed in Jan 2009, surgery, interferon. In remission at stage III. Stage 4 came in Jan 2012. Node in Lung, laprospcopic excision, watched, but more tumors popped up soon after. Started Zelboraf in February of 2012. Responded and NED until about Jan 2013, tomurs in abdomen and subqutaneous.
Hi All,
Originally diagnosed in Jan 2009, surgery, interferon. In remission at stage III. Stage 4 came in Jan 2012. Node in Lung, laprospcopic excision, watched, but more tumors popped up soon after. Started Zelboraf in February of 2012. Responded and NED until about Jan 2013, tomurs in abdomen and subqutaneous.
From the abdomen ones, I developed ascites.. drain tube was inserted and I drain approx. 2 liters per day. We stopped Zelboraf and went to YERVOY. Symptoms have been fairly mild, but getting more and more winded and fatigued. Still working except for Doc appointments. There are about 4 subqutaneous lesions I've been watching.. hard to say if there has been improvement recently, but we have done no scans since starting YERVOY. Doc says, you're the patient.. be patient.. YERVOY sometimes takes time. This seems to be confirmed by some of your stories. Now, Potassium levels are somewhat high 6.2.. and sodium is low. Doc said that MAY be due to YERVOY, but also might be dying cancer cells. I am on 25mg hydrocortison acetate twice a day, plus .1mg fludro(cortisone? Forinef is what I think he called it). Been also having some nausea, so have been taking a couple of nausea medications. Difficult to sleep through the night sometimes, so I use OTC PM medicines sometimes.
Anyone else have anything similar? Anyone with some good news about what I'm experiencing?
My spirits are pretty good.. God is in control, and I know where my future and hope is… but wonder if I have enough time to be patient with YERVOY before trying to get in trials, etc. I know BRAF-MEK is coming.. is it possible I can switch to that when the FDA approves and have a change it will be effective?
Thanks for any insight!
Chris Rowlette
Bedford, TX
- Replies
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- March 25, 2013 at 5:57 pm
There is some success I’ve heard, especially in Europe, with people going back on onto Zelboraf a time after it failed and then having success again. I stopped Zel for Ipi, had growth, and went right back to Zel with tumor shrinkage and nothing new. I had life threatening growth so I couldn’t afford to wait for 12 wk scans.It might be a good theory to go down this path, with the new BRAF, sounds good to me! What does your doc say?
I think it is a big unknown about BRAF -MEK, when it is really coming or if insurance will allow them to be taken together. They weren’t applied for that way in the US.
You attitude sounds great – that goes a long way! Trust in Him!
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- March 25, 2013 at 5:57 pm
There is some success I’ve heard, especially in Europe, with people going back on onto Zelboraf a time after it failed and then having success again. I stopped Zel for Ipi, had growth, and went right back to Zel with tumor shrinkage and nothing new. I had life threatening growth so I couldn’t afford to wait for 12 wk scans.It might be a good theory to go down this path, with the new BRAF, sounds good to me! What does your doc say?
I think it is a big unknown about BRAF -MEK, when it is really coming or if insurance will allow them to be taken together. They weren’t applied for that way in the US.
You attitude sounds great – that goes a long way! Trust in Him!
-
- March 25, 2013 at 5:57 pm
There is some success I’ve heard, especially in Europe, with people going back on onto Zelboraf a time after it failed and then having success again. I stopped Zel for Ipi, had growth, and went right back to Zel with tumor shrinkage and nothing new. I had life threatening growth so I couldn’t afford to wait for 12 wk scans.It might be a good theory to go down this path, with the new BRAF, sounds good to me! What does your doc say?
I think it is a big unknown about BRAF -MEK, when it is really coming or if insurance will allow them to be taken together. They weren’t applied for that way in the US.
You attitude sounds great – that goes a long way! Trust in Him!
-
- March 25, 2013 at 7:24 pm
My husband just had his 3rd round of Yervoy last week. The only real side effect he's had so far has been fatigue and some days he just can't make it to work because of it.
He has two tumors under the skin in his neck. One has grown from the size of a marble to the size of an egg. The other has grown form the size of a pea to that of a big "shooter" marble. Sometimes they change a bit in shape, height, and so on from day to day. We. too, have been told to be patient. It's hard! Nobody knows if the tumors are growing because the Yervoy is working or if the tumors themselves are growing. My husband has developed jaw pain due to one of the tumors. We've been told to stay the course because Yervoy can take months after the last treatment to work. In the meantime, if the tumors begin to grow rapidly he will go back on carbo/taxol to try to shrink them again.
My husband is cKit and BRAF negative, NRAS positive. There is a MEK clinical trial at Hillman in Pittsburgh that may benefit him because of the NRAS but he is not eligible becvause of a secondary primary lung cancer he was treated for in October of last year.
We pray too. God is the only way we will get through this.
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- March 25, 2013 at 7:24 pm
My husband just had his 3rd round of Yervoy last week. The only real side effect he's had so far has been fatigue and some days he just can't make it to work because of it.
He has two tumors under the skin in his neck. One has grown from the size of a marble to the size of an egg. The other has grown form the size of a pea to that of a big "shooter" marble. Sometimes they change a bit in shape, height, and so on from day to day. We. too, have been told to be patient. It's hard! Nobody knows if the tumors are growing because the Yervoy is working or if the tumors themselves are growing. My husband has developed jaw pain due to one of the tumors. We've been told to stay the course because Yervoy can take months after the last treatment to work. In the meantime, if the tumors begin to grow rapidly he will go back on carbo/taxol to try to shrink them again.
My husband is cKit and BRAF negative, NRAS positive. There is a MEK clinical trial at Hillman in Pittsburgh that may benefit him because of the NRAS but he is not eligible becvause of a secondary primary lung cancer he was treated for in October of last year.
We pray too. God is the only way we will get through this.
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- March 25, 2013 at 7:24 pm
My husband just had his 3rd round of Yervoy last week. The only real side effect he's had so far has been fatigue and some days he just can't make it to work because of it.
He has two tumors under the skin in his neck. One has grown from the size of a marble to the size of an egg. The other has grown form the size of a pea to that of a big "shooter" marble. Sometimes they change a bit in shape, height, and so on from day to day. We. too, have been told to be patient. It's hard! Nobody knows if the tumors are growing because the Yervoy is working or if the tumors themselves are growing. My husband has developed jaw pain due to one of the tumors. We've been told to stay the course because Yervoy can take months after the last treatment to work. In the meantime, if the tumors begin to grow rapidly he will go back on carbo/taxol to try to shrink them again.
My husband is cKit and BRAF negative, NRAS positive. There is a MEK clinical trial at Hillman in Pittsburgh that may benefit him because of the NRAS but he is not eligible becvause of a secondary primary lung cancer he was treated for in October of last year.
We pray too. God is the only way we will get through this.
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- March 26, 2013 at 12:36 pm
Chris,
What a blessing to have a sure hope and future 🙂 !!
It is SO challenging to have to wait to see what is going on inside. My Dr also has said that at times even the first set of scans post-Yervoy can show stable or slightly larger tumor growth, because the response is coming from the immune system and it can definitely take time. Do you know why they started you on the Hydrocortisone and Florinef? Was this prior to starting the yervoy and because of the ascites,etc? Do you still have the drainage tube in? If the florinef is being given because of decreased adrenal function ( since starting the yervoy) that can indicate an immune response. Do you know how your TSH has been? They test that as a matter of routine, I think, before every treatment.
This past visit, my Doc also told me of a couple patients he has restarted on zelboraf after a previous resistance had developed and they are having a response to it again. All new stuff. He said with all the tools presently available they are more free to try various options in various orders. Hopefully the Yervoy will be the thing, but it is always nice to know there are other possible options. I had heard the MEK would possibly be approved this summer, but I dont know that for sure. It is always such a challenge to know if the symptoms we have are side effects,symptoms from the cancer itself, or signs of response. Many times they can be so similar.
Praying for a great response for you and for peace as you wait,
Tina
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- March 26, 2013 at 1:33 pm
I am blessed immeasurably. I have an army of people praying for me, both at work (including my boss.. and I work for the FAA!) and at church, plus family and other friends. It's amazing.. we can't do it alone.
The florinef and Hydrocortison started when they detected high potassium levels.. about 2 weeks ago.. so not before Ascites or YERVOY.. I wasn't take any medication at all, then nausea hit and I lost some meals.. plus appetite hasn't been very strong in the first place. I was/still am a big guy.. was up to 350lb before they finally got to my first draining for Ascites.. course I lost about 15-16lbs from that because they drained 8 liters the first time! So I was hovering around the mid 330s, then started with the nausea and no meds.. I lost 31 pounds additionally in the two weeks after that, and some of my levels started being affected.. not sure if losing all the weight and meals combined with the constant 2 liter/day fluid removal had anything to do with it… but it was coincident with all that when they found the high potassium and low sodium. They said these two drugs would hopefully hold the potassium at bay. Doc said just because it's high is kind of dangerous in itself, but the real danger is when the levels spike.
I haven't asked about TSH, but I certainly will. Doc said this could be the sign of YERVOY kicking in, so I'm hopeful.
Thanks for the info on the MEK, and I appreciate your prayers. Did bloodwork yesterday and potassium is still high.. plus creatinine is inching up so they're giving me some fluids today.. gonna ask about the TSH.
Chris
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- March 26, 2013 at 1:33 pm
I am blessed immeasurably. I have an army of people praying for me, both at work (including my boss.. and I work for the FAA!) and at church, plus family and other friends. It's amazing.. we can't do it alone.
The florinef and Hydrocortison started when they detected high potassium levels.. about 2 weeks ago.. so not before Ascites or YERVOY.. I wasn't take any medication at all, then nausea hit and I lost some meals.. plus appetite hasn't been very strong in the first place. I was/still am a big guy.. was up to 350lb before they finally got to my first draining for Ascites.. course I lost about 15-16lbs from that because they drained 8 liters the first time! So I was hovering around the mid 330s, then started with the nausea and no meds.. I lost 31 pounds additionally in the two weeks after that, and some of my levels started being affected.. not sure if losing all the weight and meals combined with the constant 2 liter/day fluid removal had anything to do with it… but it was coincident with all that when they found the high potassium and low sodium. They said these two drugs would hopefully hold the potassium at bay. Doc said just because it's high is kind of dangerous in itself, but the real danger is when the levels spike.
I haven't asked about TSH, but I certainly will. Doc said this could be the sign of YERVOY kicking in, so I'm hopeful.
Thanks for the info on the MEK, and I appreciate your prayers. Did bloodwork yesterday and potassium is still high.. plus creatinine is inching up so they're giving me some fluids today.. gonna ask about the TSH.
Chris
-
- March 26, 2013 at 1:33 pm
I am blessed immeasurably. I have an army of people praying for me, both at work (including my boss.. and I work for the FAA!) and at church, plus family and other friends. It's amazing.. we can't do it alone.
The florinef and Hydrocortison started when they detected high potassium levels.. about 2 weeks ago.. so not before Ascites or YERVOY.. I wasn't take any medication at all, then nausea hit and I lost some meals.. plus appetite hasn't been very strong in the first place. I was/still am a big guy.. was up to 350lb before they finally got to my first draining for Ascites.. course I lost about 15-16lbs from that because they drained 8 liters the first time! So I was hovering around the mid 330s, then started with the nausea and no meds.. I lost 31 pounds additionally in the two weeks after that, and some of my levels started being affected.. not sure if losing all the weight and meals combined with the constant 2 liter/day fluid removal had anything to do with it… but it was coincident with all that when they found the high potassium and low sodium. They said these two drugs would hopefully hold the potassium at bay. Doc said just because it's high is kind of dangerous in itself, but the real danger is when the levels spike.
I haven't asked about TSH, but I certainly will. Doc said this could be the sign of YERVOY kicking in, so I'm hopeful.
Thanks for the info on the MEK, and I appreciate your prayers. Did bloodwork yesterday and potassium is still high.. plus creatinine is inching up so they're giving me some fluids today.. gonna ask about the TSH.
Chris
-
- March 26, 2013 at 12:36 pm
Chris,
What a blessing to have a sure hope and future 🙂 !!
It is SO challenging to have to wait to see what is going on inside. My Dr also has said that at times even the first set of scans post-Yervoy can show stable or slightly larger tumor growth, because the response is coming from the immune system and it can definitely take time. Do you know why they started you on the Hydrocortisone and Florinef? Was this prior to starting the yervoy and because of the ascites,etc? Do you still have the drainage tube in? If the florinef is being given because of decreased adrenal function ( since starting the yervoy) that can indicate an immune response. Do you know how your TSH has been? They test that as a matter of routine, I think, before every treatment.
This past visit, my Doc also told me of a couple patients he has restarted on zelboraf after a previous resistance had developed and they are having a response to it again. All new stuff. He said with all the tools presently available they are more free to try various options in various orders. Hopefully the Yervoy will be the thing, but it is always nice to know there are other possible options. I had heard the MEK would possibly be approved this summer, but I dont know that for sure. It is always such a challenge to know if the symptoms we have are side effects,symptoms from the cancer itself, or signs of response. Many times they can be so similar.
Praying for a great response for you and for peace as you wait,
Tina
-
- March 26, 2013 at 12:36 pm
Chris,
What a blessing to have a sure hope and future 🙂 !!
It is SO challenging to have to wait to see what is going on inside. My Dr also has said that at times even the first set of scans post-Yervoy can show stable or slightly larger tumor growth, because the response is coming from the immune system and it can definitely take time. Do you know why they started you on the Hydrocortisone and Florinef? Was this prior to starting the yervoy and because of the ascites,etc? Do you still have the drainage tube in? If the florinef is being given because of decreased adrenal function ( since starting the yervoy) that can indicate an immune response. Do you know how your TSH has been? They test that as a matter of routine, I think, before every treatment.
This past visit, my Doc also told me of a couple patients he has restarted on zelboraf after a previous resistance had developed and they are having a response to it again. All new stuff. He said with all the tools presently available they are more free to try various options in various orders. Hopefully the Yervoy will be the thing, but it is always nice to know there are other possible options. I had heard the MEK would possibly be approved this summer, but I dont know that for sure. It is always such a challenge to know if the symptoms we have are side effects,symptoms from the cancer itself, or signs of response. Many times they can be so similar.
Praying for a great response for you and for peace as you wait,
Tina
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