› Forums › General Melanoma Community › My Husband, Stopped Zelboraf for WBR
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kristine.
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- April 10, 2012 at 7:19 pm
I had to create a new login (24hourmom)–I wrote an original post as 24hourmommy. No matter how I tried, I couldn't login under the old name. I realize my post is very long, I'm sorry. I log on a lot and read for support, but today I need to post. I just don't know where we are headed with all of this and the doctors have been very vague.
After I posted last May, my husband's 3rd Yervoy treatment was cancelled due to the diarrhea and he was put in the hospital for the entire month of July.
I had to create a new login (24hourmom)–I wrote an original post as 24hourmommy. No matter how I tried, I couldn't login under the old name. I realize my post is very long, I'm sorry. I log on a lot and read for support, but today I need to post. I just don't know where we are headed with all of this and the doctors have been very vague.
After I posted last May, my husband's 3rd Yervoy treatment was cancelled due to the diarrhea and he was put in the hospital for the entire month of July.
We were told in early July that scans showed shrinkage from the 2 Yervoy treatments but then August scans told us the melanoma was growing again. He went through all of that suffering for almost two months and if he'd had the 3rd Yervoy treatment, I think it would have been deadly.
In August, I took him to Columbia, SC to get into a Zelboraf trial and he was accepted. Then Zelboraf was approved early and he was removed from the trial. He started Zelboraf as a prescription in September.
He has been on Zelboraf since Sept. and his Nov scans showed us "considerable shrinkage in all areas of concern", his spleen, lymph nodes and lung and liver all responded. His doctors were thrilled and he was uplifted.
We went for his routine three month scans 3/16/12 and were told there is new activity in his liver and his brain. He had to stop his Zelboraf to start radiation, due to doctor's concerns about skin problems.
We started Whole Brain Radiation (14 treatments). He has one lesion (2cm) on his cerebellum, we're told he'll need pinpoint radiation later for that and many small spots that they hope the WBR will help.
The radiation oncologist did not want him to start a steroid initially because he wasn't having headaches and said the steriod can damage his liver (which is already a problem) but we had to start the steroid last week. The headaches started and he was vomiting. Now, on the steroid, the headaches are under control.
The nurse intially told him not to drive. Then the doctor told him he could drive at his discretion but said "not to quote him on it and don't go on the interstate". I'm confused because I don't think he should be driving as one doctor told us he could have a seizure at any time.
He will recieve his last WBT tomorrow and can restart Zelboraf next week. We won't go see the doctor again until May or have scans for at least 6 weeks. I guess now is just the time to wait and see.
He is exhausted all the time and I am getting mentally worn out.
I feel horrible just writing this because I know it must be harder on him than it is on me but the focus is continually on him and this disease. The efforts I make toward normalcy are met with resentment and then I feel guilty. I am so sad for my kids this week because it is Spring Break and they need a break from all of this.
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- April 10, 2012 at 7:52 pm
24hrmom, there is a caregivers support group here: http://forum.melanomaintl.org/toastforums/toast.asp
You might want to read through some of the topics there and then join and post this message.
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- April 10, 2012 at 8:05 pm
Thank you for the link. I will post there. I'm sorry if this post was in the wrong place. I'd hoped possibly someone going through it could give me their point of view or how to be more supportive. Even what I may be able to expect? I realize no one has a crystal ball and every situation is different but I just feel like I'm walking on eggshells and don't recognize our life anymore.
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- April 10, 2012 at 8:05 pm
Thank you for the link. I will post there. I'm sorry if this post was in the wrong place. I'd hoped possibly someone going through it could give me their point of view or how to be more supportive. Even what I may be able to expect? I realize no one has a crystal ball and every situation is different but I just feel like I'm walking on eggshells and don't recognize our life anymore.
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- April 10, 2012 at 8:05 pm
Thank you for the link. I will post there. I'm sorry if this post was in the wrong place. I'd hoped possibly someone going through it could give me their point of view or how to be more supportive. Even what I may be able to expect? I realize no one has a crystal ball and every situation is different but I just feel like I'm walking on eggshells and don't recognize our life anymore.
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- April 10, 2012 at 7:52 pm
24hrmom, there is a caregivers support group here: http://forum.melanomaintl.org/toastforums/toast.asp
You might want to read through some of the topics there and then join and post this message.
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- April 10, 2012 at 7:52 pm
24hrmom, there is a caregivers support group here: http://forum.melanomaintl.org/toastforums/toast.asp
You might want to read through some of the topics there and then join and post this message.
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- April 10, 2012 at 8:30 pm
I reread my intial post and I just need to add that I am not posting to complain but I just feel so overwhelmed for him.
I am so scared. I want to be supportive and want to make sure we're on the right track. God forbid he continues to drive and something happens to him or someone else. The daily trips to radiation seem to take everything out of him and he seems to be depressed. He was on an antidepressant for a while but the doctor discontinued it due to fatigue side effects. Combined with the Zelboraf, he was so exhausted.
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- April 10, 2012 at 9:03 pm
I wasn't meaning to suggest you shouldn't post here. I think the more support you can find for yourself the better. I can't give you any real insight into what to expect. My husband's first melanoma appeared on his neck last March but the doctor thought he had gotten it all since nothing appeared in the lymph nodes. Following a routine chest xray in October the doctor thought he saw something in the lung so my husband went in for a PET scan, This showed that the lungs were okay but there was a tumor in the spleen. The day after Thanksgiving he had surgery to take out his spleen. He was approved for Yervoy but is BRAF negative so the Zelboraf isn't an option. Then he had a scan which showed a tumor on his liver. He had one infusion of Yervoy at which time he developed Bell's palsy on the left side of his face. At some point he developed double vision so couldn't drive and I became the main driver. He had three infusions and then the doctor wanted a scan of his head because the Bell's didn't seem to be getting better. This showed a tumor on the left side of his brain. So the Yervoy was stopped in order for him to have gamma knife surgery on the brain tumor. He was put on steroids to stop any possible brain swelling which meant he couldn't have the fourth Yervoy infusion.
We are now waiting, next week we have appointments for a head MRI to check the brain, an appmt with the radiologist, the neurologist who did the gamma knife and an appmt with his hematologist to see if we can restart the Yervoy.
It all gets to me too, I get resentful that our lives are on hold, that he isn't able to drive, that he can't walk with me like he used to, that he is tired much of the time, that I can't understand his speech everytime he speaks, that we aren't camping like we should be and that we aren't able to move as we wanted to. I also get impatient and realized this morning that the impatience is sometimes due to fear because of the unknown factor in all of this and because he isn't the husband I am used to. My husband is 77 years old, we've had 51 years together so we've had a good life together, but I'm not ready for it to be over and that thought overwhelms me at times. We had plans to move closer to the ocean this year and all of that is up in the air right now. I am fairly positive in outlook but try to be realistic. Melanoma is a deadly disease and not many have a full recovery or positive response despite the new treatments. But the new treatments are better than they were and that makes me hopeful.
I hope this helps you to know that anyone who is helping and caring for a loved one who is ill feels helpless and lost at times.
Susan
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- April 10, 2012 at 9:33 pm
Thank you, Susan. I appreciate it very much. You and your husband have had a wonderful marriage. I don't blame you for wanting things to stay the way they had been. I hope he can restart the Yervoy next week.
My husband and I have been married for 16 years and my children are 14, 12 and 8. I realize that the reality of this disease is so hard but I am still hoping for a miracle. I keep telling him that he deserves to beat this as much as anyone.
I didn't think you suggested not to post here, I just reread my posts and I hope I didn't come across as insensitive. It's so hard for me to convey what I am trying to say over the internet sometimes.
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- April 10, 2012 at 11:00 pm
Yes, I understand what you mean. I've had more than one Fup through the internet where what I said didn't come across as what I was trying to say. But I didn't take yours that way at all, I was just showing you another option for talking. The people on the other board are all caregivers of one kind or another and as they say there is comfort in like company. Might give you another place to talk about your fears.
I can't imagine having to go through this with such young kids, mine are all grown and long gone. It must be so hard to try to keep not only your spirits up but to not convey too much apprehension to them. As I said, we've had a good long run together and quite honestly, at our ages one does expect it to end at some point. So I'm okay with whatever happens, good or not so much.
susan
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- April 10, 2012 at 11:36 pm
We are also from south carolina but we go to charleston for treatments. We had 5 brain lesions had whole brain in nov. It made my husband terrible sick. Just felt God let us to seek other dr. We went to charleston have had gamma knive dr were very positive. We just finished ippi march and having scans tomo. Would love to talk to you. -
- April 11, 2012 at 3:05 am
Good luck on your scans tomorrow. Thank you for the support. WBT hasn't made him sick but horrible skin rashes and burning. He's so completely exhausted. I would love to go to Charleston but not under those circumstances, of course.
I would love to talk to you, too.
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- April 11, 2012 at 3:05 am
Good luck on your scans tomorrow. Thank you for the support. WBT hasn't made him sick but horrible skin rashes and burning. He's so completely exhausted. I would love to go to Charleston but not under those circumstances, of course.
I would love to talk to you, too.
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- April 11, 2012 at 3:05 am
Good luck on your scans tomorrow. Thank you for the support. WBT hasn't made him sick but horrible skin rashes and burning. He's so completely exhausted. I would love to go to Charleston but not under those circumstances, of course.
I would love to talk to you, too.
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- April 10, 2012 at 11:36 pm
We are also from south carolina but we go to charleston for treatments. We had 5 brain lesions had whole brain in nov. It made my husband terrible sick. Just felt God let us to seek other dr. We went to charleston have had gamma knive dr were very positive. We just finished ippi march and having scans tomo. Would love to talk to you. -
- April 10, 2012 at 11:36 pm
We are also from south carolina but we go to charleston for treatments. We had 5 brain lesions had whole brain in nov. It made my husband terrible sick. Just felt God let us to seek other dr. We went to charleston have had gamma knive dr were very positive. We just finished ippi march and having scans tomo. Would love to talk to you. -
- April 10, 2012 at 11:00 pm
Yes, I understand what you mean. I've had more than one Fup through the internet where what I said didn't come across as what I was trying to say. But I didn't take yours that way at all, I was just showing you another option for talking. The people on the other board are all caregivers of one kind or another and as they say there is comfort in like company. Might give you another place to talk about your fears.
I can't imagine having to go through this with such young kids, mine are all grown and long gone. It must be so hard to try to keep not only your spirits up but to not convey too much apprehension to them. As I said, we've had a good long run together and quite honestly, at our ages one does expect it to end at some point. So I'm okay with whatever happens, good or not so much.
susan
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- April 10, 2012 at 11:00 pm
Yes, I understand what you mean. I've had more than one Fup through the internet where what I said didn't come across as what I was trying to say. But I didn't take yours that way at all, I was just showing you another option for talking. The people on the other board are all caregivers of one kind or another and as they say there is comfort in like company. Might give you another place to talk about your fears.
I can't imagine having to go through this with such young kids, mine are all grown and long gone. It must be so hard to try to keep not only your spirits up but to not convey too much apprehension to them. As I said, we've had a good long run together and quite honestly, at our ages one does expect it to end at some point. So I'm okay with whatever happens, good or not so much.
susan
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- April 10, 2012 at 9:33 pm
Thank you, Susan. I appreciate it very much. You and your husband have had a wonderful marriage. I don't blame you for wanting things to stay the way they had been. I hope he can restart the Yervoy next week.
My husband and I have been married for 16 years and my children are 14, 12 and 8. I realize that the reality of this disease is so hard but I am still hoping for a miracle. I keep telling him that he deserves to beat this as much as anyone.
I didn't think you suggested not to post here, I just reread my posts and I hope I didn't come across as insensitive. It's so hard for me to convey what I am trying to say over the internet sometimes.
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- April 10, 2012 at 9:33 pm
Thank you, Susan. I appreciate it very much. You and your husband have had a wonderful marriage. I don't blame you for wanting things to stay the way they had been. I hope he can restart the Yervoy next week.
My husband and I have been married for 16 years and my children are 14, 12 and 8. I realize that the reality of this disease is so hard but I am still hoping for a miracle. I keep telling him that he deserves to beat this as much as anyone.
I didn't think you suggested not to post here, I just reread my posts and I hope I didn't come across as insensitive. It's so hard for me to convey what I am trying to say over the internet sometimes.
-
- April 10, 2012 at 9:03 pm
I wasn't meaning to suggest you shouldn't post here. I think the more support you can find for yourself the better. I can't give you any real insight into what to expect. My husband's first melanoma appeared on his neck last March but the doctor thought he had gotten it all since nothing appeared in the lymph nodes. Following a routine chest xray in October the doctor thought he saw something in the lung so my husband went in for a PET scan, This showed that the lungs were okay but there was a tumor in the spleen. The day after Thanksgiving he had surgery to take out his spleen. He was approved for Yervoy but is BRAF negative so the Zelboraf isn't an option. Then he had a scan which showed a tumor on his liver. He had one infusion of Yervoy at which time he developed Bell's palsy on the left side of his face. At some point he developed double vision so couldn't drive and I became the main driver. He had three infusions and then the doctor wanted a scan of his head because the Bell's didn't seem to be getting better. This showed a tumor on the left side of his brain. So the Yervoy was stopped in order for him to have gamma knife surgery on the brain tumor. He was put on steroids to stop any possible brain swelling which meant he couldn't have the fourth Yervoy infusion.
We are now waiting, next week we have appointments for a head MRI to check the brain, an appmt with the radiologist, the neurologist who did the gamma knife and an appmt with his hematologist to see if we can restart the Yervoy.
It all gets to me too, I get resentful that our lives are on hold, that he isn't able to drive, that he can't walk with me like he used to, that he is tired much of the time, that I can't understand his speech everytime he speaks, that we aren't camping like we should be and that we aren't able to move as we wanted to. I also get impatient and realized this morning that the impatience is sometimes due to fear because of the unknown factor in all of this and because he isn't the husband I am used to. My husband is 77 years old, we've had 51 years together so we've had a good life together, but I'm not ready for it to be over and that thought overwhelms me at times. We had plans to move closer to the ocean this year and all of that is up in the air right now. I am fairly positive in outlook but try to be realistic. Melanoma is a deadly disease and not many have a full recovery or positive response despite the new treatments. But the new treatments are better than they were and that makes me hopeful.
I hope this helps you to know that anyone who is helping and caring for a loved one who is ill feels helpless and lost at times.
Susan
-
- April 10, 2012 at 9:03 pm
I wasn't meaning to suggest you shouldn't post here. I think the more support you can find for yourself the better. I can't give you any real insight into what to expect. My husband's first melanoma appeared on his neck last March but the doctor thought he had gotten it all since nothing appeared in the lymph nodes. Following a routine chest xray in October the doctor thought he saw something in the lung so my husband went in for a PET scan, This showed that the lungs were okay but there was a tumor in the spleen. The day after Thanksgiving he had surgery to take out his spleen. He was approved for Yervoy but is BRAF negative so the Zelboraf isn't an option. Then he had a scan which showed a tumor on his liver. He had one infusion of Yervoy at which time he developed Bell's palsy on the left side of his face. At some point he developed double vision so couldn't drive and I became the main driver. He had three infusions and then the doctor wanted a scan of his head because the Bell's didn't seem to be getting better. This showed a tumor on the left side of his brain. So the Yervoy was stopped in order for him to have gamma knife surgery on the brain tumor. He was put on steroids to stop any possible brain swelling which meant he couldn't have the fourth Yervoy infusion.
We are now waiting, next week we have appointments for a head MRI to check the brain, an appmt with the radiologist, the neurologist who did the gamma knife and an appmt with his hematologist to see if we can restart the Yervoy.
It all gets to me too, I get resentful that our lives are on hold, that he isn't able to drive, that he can't walk with me like he used to, that he is tired much of the time, that I can't understand his speech everytime he speaks, that we aren't camping like we should be and that we aren't able to move as we wanted to. I also get impatient and realized this morning that the impatience is sometimes due to fear because of the unknown factor in all of this and because he isn't the husband I am used to. My husband is 77 years old, we've had 51 years together so we've had a good life together, but I'm not ready for it to be over and that thought overwhelms me at times. We had plans to move closer to the ocean this year and all of that is up in the air right now. I am fairly positive in outlook but try to be realistic. Melanoma is a deadly disease and not many have a full recovery or positive response despite the new treatments. But the new treatments are better than they were and that makes me hopeful.
I hope this helps you to know that anyone who is helping and caring for a loved one who is ill feels helpless and lost at times.
Susan
-
- April 10, 2012 at 8:30 pm
I reread my intial post and I just need to add that I am not posting to complain but I just feel so overwhelmed for him.
I am so scared. I want to be supportive and want to make sure we're on the right track. God forbid he continues to drive and something happens to him or someone else. The daily trips to radiation seem to take everything out of him and he seems to be depressed. He was on an antidepressant for a while but the doctor discontinued it due to fatigue side effects. Combined with the Zelboraf, he was so exhausted.
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- April 10, 2012 at 8:30 pm
I reread my intial post and I just need to add that I am not posting to complain but I just feel so overwhelmed for him.
I am so scared. I want to be supportive and want to make sure we're on the right track. God forbid he continues to drive and something happens to him or someone else. The daily trips to radiation seem to take everything out of him and he seems to be depressed. He was on an antidepressant for a while but the doctor discontinued it due to fatigue side effects. Combined with the Zelboraf, he was so exhausted.
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- April 11, 2012 at 11:25 am
I just wanted to let you know that I know what you are going through. Please don't feel guilty. Having to help care for a sick spouse is difficult on anyone, but when you have children at home, it can be overwhelming. My kids are 13, 12, and 9, so I know. And it is important to keep some normalcy for their sake. I wish there was a magic wand we could wave to make it easier.
If you ever want to talk, I'd be more than happy to. I know that sometimes talking with family about it makes you feel guilty, and talking to somebody who's in the same boat does help.
I hope that things get easier for you. Hugs (())
Maria
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- April 11, 2012 at 11:25 am
I just wanted to let you know that I know what you are going through. Please don't feel guilty. Having to help care for a sick spouse is difficult on anyone, but when you have children at home, it can be overwhelming. My kids are 13, 12, and 9, so I know. And it is important to keep some normalcy for their sake. I wish there was a magic wand we could wave to make it easier.
If you ever want to talk, I'd be more than happy to. I know that sometimes talking with family about it makes you feel guilty, and talking to somebody who's in the same boat does help.
I hope that things get easier for you. Hugs (())
Maria
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- April 11, 2012 at 11:25 am
I just wanted to let you know that I know what you are going through. Please don't feel guilty. Having to help care for a sick spouse is difficult on anyone, but when you have children at home, it can be overwhelming. My kids are 13, 12, and 9, so I know. And it is important to keep some normalcy for their sake. I wish there was a magic wand we could wave to make it easier.
If you ever want to talk, I'd be more than happy to. I know that sometimes talking with family about it makes you feel guilty, and talking to somebody who's in the same boat does help.
I hope that things get easier for you. Hugs (())
Maria
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- April 11, 2012 at 4:27 pm
My husband has been fighting this disease since May 2010 – Zelboraf , IPI, Whole Brain R.T, SRS Radiation, and now Temador. It is a roller coaster to say the least. My husband has not been able to drive for the last 2 months – It has been very tough on him (as well as myself). I just want you to know that you are not alone – if you can, have someone stay with your husband a few hours here for you to go spend some "me" time, or time with your children. God Bless you and your family – Praying for strength and peace for you – as caregivers have an enormous amount of responsibility.
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- April 11, 2012 at 4:27 pm
My husband has been fighting this disease since May 2010 – Zelboraf , IPI, Whole Brain R.T, SRS Radiation, and now Temador. It is a roller coaster to say the least. My husband has not been able to drive for the last 2 months – It has been very tough on him (as well as myself). I just want you to know that you are not alone – if you can, have someone stay with your husband a few hours here for you to go spend some "me" time, or time with your children. God Bless you and your family – Praying for strength and peace for you – as caregivers have an enormous amount of responsibility.
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- April 11, 2012 at 4:27 pm
My husband has been fighting this disease since May 2010 – Zelboraf , IPI, Whole Brain R.T, SRS Radiation, and now Temador. It is a roller coaster to say the least. My husband has not been able to drive for the last 2 months – It has been very tough on him (as well as myself). I just want you to know that you are not alone – if you can, have someone stay with your husband a few hours here for you to go spend some "me" time, or time with your children. God Bless you and your family – Praying for strength and peace for you – as caregivers have an enormous amount of responsibility.
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