› Forums › General Melanoma Community › Husband in pain
- This topic has 27 replies, 4 voices, and was last updated 9 years ago by
Terrified.
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- November 30, 2016 at 8:13 pm
My husband of 38 years had a malignatn melanoma removed from his scalp in February 2015. 2.2 mm depth invasion, no ulceration. Had wide local excision after first excision with no residual tumor and sentinel lymph nodes negative. Followed by dermatologist with only benign nevi removed periodically. Chest XR and blood work normal. Was an active 59 year old, lifting weights,walking five miles a day, working full time. Then three weeks ago, began to have night sweats,fatigue and back pain. Went to PCP, chest XR suspiciious for "nodules", then Chest CT, abdominal CT, Head CT and MRI, pelvic /spine MRI. Mets to liver/lung/bone/brain/spleen. Then two weeks ago hospitalized for hypercalcemia, had liver biopsy confirming melanoma, gamma knife to brain lesion. One week ago started on Mek and Taflinar as BRAF V600K mutation positive and thought too sick to get ipi/nivo.
We see the oncologist again in two days. He seems slighlty better in that he has started eating again (around day 2 of meds) He has a large tumor load and this feels as if it just exploded inside him. He went from totally normal 3 weeks ago to losing 25 pounds, now gets winded walking from couch to toilet, and in pain from hip/compression fractures/rib mets, etc. When he is not in pain, he is sleeping. Is this our new normal? Do the meds just prevent progression until they fail or do they cause regression? I know that some people feel better right away. Because he is on day 8 and still so sick, does this mean this wont work?
He is the love of my life and I don't know what to do.
- Replies
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- November 30, 2016 at 11:39 pm
Hi… so sorry to hear that your husband was hammered by this so rapidly. I was an oddball BRAF mutation, so did not have the Taflinar, but did have great results with tumor regression very quickly on MEK. I am certain there are more people on the forum here with far more experience with these drugs than I had, but I do know from reading posts that the meds will help shrink the tumors and often can make them go away entirely! Using just MEK, my 9cm lung tumor dropped to half size within 45 days. A subQ (approximately the size of a pea) near my right breast was no longer palable after only 2 weeks. The BRAF inhibitors that he is on do tend to work more rapidly than the immunotherapies currently available. Because he has a large tumor load, and it sounds as if the lesions have caused some additional damage, he may take a little longer for the pain to subside. You two are in a most frightening phase right now. Please hang onto hope, he may already have some tumor regression that is going unnoticed. As the patient who had to watch my husband go through the mental anxiety of being a caregiver, I can tell you… this is more likely a tougher mind game for you than it is for him. Hugs to you both. You're going to find some great support from the group here.
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- November 30, 2016 at 11:39 pm
Hi… so sorry to hear that your husband was hammered by this so rapidly. I was an oddball BRAF mutation, so did not have the Taflinar, but did have great results with tumor regression very quickly on MEK. I am certain there are more people on the forum here with far more experience with these drugs than I had, but I do know from reading posts that the meds will help shrink the tumors and often can make them go away entirely! Using just MEK, my 9cm lung tumor dropped to half size within 45 days. A subQ (approximately the size of a pea) near my right breast was no longer palable after only 2 weeks. The BRAF inhibitors that he is on do tend to work more rapidly than the immunotherapies currently available. Because he has a large tumor load, and it sounds as if the lesions have caused some additional damage, he may take a little longer for the pain to subside. You two are in a most frightening phase right now. Please hang onto hope, he may already have some tumor regression that is going unnoticed. As the patient who had to watch my husband go through the mental anxiety of being a caregiver, I can tell you… this is more likely a tougher mind game for you than it is for him. Hugs to you both. You're going to find some great support from the group here.
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- December 1, 2016 at 2:52 pm
I see from your profile, that your husband is being treated at UPMC. My husband's family is from Pittsburgh! His sister is a Physician's Assistant at Hillman. She works with an oncologist in the brain cancer department. Certainly not the easiest place to get to (particularly in the winter weather), but the center has a great reputation. My former medical oncologist (he moved to MD Anderson in Houston last year), spent the earlier part of his career at UPMC. Small world. : ) I hope your hubs is feeling a little better each day… and hope that "alone and scared" will ease as this new phase of the roller coaster ride moves along.
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- December 1, 2016 at 2:52 pm
I see from your profile, that your husband is being treated at UPMC. My husband's family is from Pittsburgh! His sister is a Physician's Assistant at Hillman. She works with an oncologist in the brain cancer department. Certainly not the easiest place to get to (particularly in the winter weather), but the center has a great reputation. My former medical oncologist (he moved to MD Anderson in Houston last year), spent the earlier part of his career at UPMC. Small world. : ) I hope your hubs is feeling a little better each day… and hope that "alone and scared" will ease as this new phase of the roller coaster ride moves along.
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- December 2, 2016 at 4:29 am
Niki
It truly is a roller coaster ride. I reel from anxious to depressed to hopeful . His oncologist has been wonderful. Just so hard to live in the moment and not go down the anxiety train.
Pittsburgh is a cool town, despite the gray, snowy winters. But oncologist said that's an advantage since he needs to avoid the sun on the meds.
Judy
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- December 2, 2016 at 4:29 am
Niki
It truly is a roller coaster ride. I reel from anxious to depressed to hopeful . His oncologist has been wonderful. Just so hard to live in the moment and not go down the anxiety train.
Pittsburgh is a cool town, despite the gray, snowy winters. But oncologist said that's an advantage since he needs to avoid the sun on the meds.
Judy
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- December 2, 2016 at 4:29 am
Niki
It truly is a roller coaster ride. I reel from anxious to depressed to hopeful . His oncologist has been wonderful. Just so hard to live in the moment and not go down the anxiety train.
Pittsburgh is a cool town, despite the gray, snowy winters. But oncologist said that's an advantage since he needs to avoid the sun on the meds.
Judy
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- December 1, 2016 at 2:52 pm
I see from your profile, that your husband is being treated at UPMC. My husband's family is from Pittsburgh! His sister is a Physician's Assistant at Hillman. She works with an oncologist in the brain cancer department. Certainly not the easiest place to get to (particularly in the winter weather), but the center has a great reputation. My former medical oncologist (he moved to MD Anderson in Houston last year), spent the earlier part of his career at UPMC. Small world. : ) I hope your hubs is feeling a little better each day… and hope that "alone and scared" will ease as this new phase of the roller coaster ride moves along.
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- December 3, 2016 at 1:42 am
Good Evening,
I was diagnosed with Melanoma on the scalp in February, 2015. The lesion was excised, as well as some sentinel lymph nodes, of which three tested positive for melanoma.
I continued on quite fine until recently, when a cervical lymph node became enlarged and tested positive for melanoma.
I still felt reasonably well. I started a regimen of Tafinlar and Mekinist about three weeks ago, which was very difficult. I moved from the bed to the couch, with blurring vision and aching joints. It was quite horrible. I was quite unable to function.
Over the past week I have taken a reduced dosage of Tafinlar, after consulting my Doctor. I feel remarkably better and continue to see tumor shrinkage in my neck, which was noticable immediately upon starting the drugs.
I just thought I would share this.
All the best,
Jane
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- December 3, 2016 at 1:42 am
Good Evening,
I was diagnosed with Melanoma on the scalp in February, 2015. The lesion was excised, as well as some sentinel lymph nodes, of which three tested positive for melanoma.
I continued on quite fine until recently, when a cervical lymph node became enlarged and tested positive for melanoma.
I still felt reasonably well. I started a regimen of Tafinlar and Mekinist about three weeks ago, which was very difficult. I moved from the bed to the couch, with blurring vision and aching joints. It was quite horrible. I was quite unable to function.
Over the past week I have taken a reduced dosage of Tafinlar, after consulting my Doctor. I feel remarkably better and continue to see tumor shrinkage in my neck, which was noticable immediately upon starting the drugs.
I just thought I would share this.
All the best,
Jane
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- December 3, 2016 at 1:42 am
Good Evening,
I was diagnosed with Melanoma on the scalp in February, 2015. The lesion was excised, as well as some sentinel lymph nodes, of which three tested positive for melanoma.
I continued on quite fine until recently, when a cervical lymph node became enlarged and tested positive for melanoma.
I still felt reasonably well. I started a regimen of Tafinlar and Mekinist about three weeks ago, which was very difficult. I moved from the bed to the couch, with blurring vision and aching joints. It was quite horrible. I was quite unable to function.
Over the past week I have taken a reduced dosage of Tafinlar, after consulting my Doctor. I feel remarkably better and continue to see tumor shrinkage in my neck, which was noticable immediately upon starting the drugs.
I just thought I would share this.
All the best,
Jane
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- November 30, 2016 at 11:39 pm
Hi… so sorry to hear that your husband was hammered by this so rapidly. I was an oddball BRAF mutation, so did not have the Taflinar, but did have great results with tumor regression very quickly on MEK. I am certain there are more people on the forum here with far more experience with these drugs than I had, but I do know from reading posts that the meds will help shrink the tumors and often can make them go away entirely! Using just MEK, my 9cm lung tumor dropped to half size within 45 days. A subQ (approximately the size of a pea) near my right breast was no longer palable after only 2 weeks. The BRAF inhibitors that he is on do tend to work more rapidly than the immunotherapies currently available. Because he has a large tumor load, and it sounds as if the lesions have caused some additional damage, he may take a little longer for the pain to subside. You two are in a most frightening phase right now. Please hang onto hope, he may already have some tumor regression that is going unnoticed. As the patient who had to watch my husband go through the mental anxiety of being a caregiver, I can tell you… this is more likely a tougher mind game for you than it is for him. Hugs to you both. You're going to find some great support from the group here.
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- December 1, 2016 at 5:31 pm
HI – so sorry that you're going through such a scary time. My husband has been battling for almost 5 years and we've had several serious scares along the way but he has remarkably bounced back from some very dire times. He has been on Tafinlar for three years with initial decrease/regression in tumor burden followed by a long period of stability. You may need to be patient for a bit longer to see how your husband responds. At this point, I'd recommend taking this one day at a time and only worry about keeping him as comfortable as possible. Has his oncologist prescribed something for the pain?? It's so important to get ahead of the pain. I know how heartbreaking this is for you and send my best wishes.
Ann
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- December 1, 2016 at 5:31 pm
HI – so sorry that you're going through such a scary time. My husband has been battling for almost 5 years and we've had several serious scares along the way but he has remarkably bounced back from some very dire times. He has been on Tafinlar for three years with initial decrease/regression in tumor burden followed by a long period of stability. You may need to be patient for a bit longer to see how your husband responds. At this point, I'd recommend taking this one day at a time and only worry about keeping him as comfortable as possible. Has his oncologist prescribed something for the pain?? It's so important to get ahead of the pain. I know how heartbreaking this is for you and send my best wishes.
Ann
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- December 1, 2016 at 5:31 pm
HI – so sorry that you're going through such a scary time. My husband has been battling for almost 5 years and we've had several serious scares along the way but he has remarkably bounced back from some very dire times. He has been on Tafinlar for three years with initial decrease/regression in tumor burden followed by a long period of stability. You may need to be patient for a bit longer to see how your husband responds. At this point, I'd recommend taking this one day at a time and only worry about keeping him as comfortable as possible. Has his oncologist prescribed something for the pain?? It's so important to get ahead of the pain. I know how heartbreaking this is for you and send my best wishes.
Ann
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- December 6, 2016 at 3:35 am
Ann
His LDH dropped from 784 to 435, so still abnormal but at least going in the right direction. Repeat scans are set for six weeks after starting meds, so the third of January. Said they would schedule him for radiation to back and hip after that. He did get low dose oxycodone (10 mg bid) which knocks him out for two hourr. The only way he can sleep is in a recliner chair, as bed seems to just really hurt.
Judy
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- December 6, 2016 at 3:35 am
Ann
His LDH dropped from 784 to 435, so still abnormal but at least going in the right direction. Repeat scans are set for six weeks after starting meds, so the third of January. Said they would schedule him for radiation to back and hip after that. He did get low dose oxycodone (10 mg bid) which knocks him out for two hourr. The only way he can sleep is in a recliner chair, as bed seems to just really hurt.
Judy
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- December 6, 2016 at 3:35 am
Ann
His LDH dropped from 784 to 435, so still abnormal but at least going in the right direction. Repeat scans are set for six weeks after starting meds, so the third of January. Said they would schedule him for radiation to back and hip after that. He did get low dose oxycodone (10 mg bid) which knocks him out for two hourr. The only way he can sleep is in a recliner chair, as bed seems to just really hurt.
Judy
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