› Forums › General Melanoma Community › In Dallas – the longest day – encouragement wanted
- This topic has 54 replies, 6 voices, and was last updated 9 years ago by
dentholla.
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- April 16, 2015 at 1:01 am
I posted a few weeks ago about my husband being newly diagnosed with melanoma. He had a shave biopsy that I was not excited about (method) and pathology results that were all pointing to >than what was estimated. As it stands we received the results back from the SNB and the node (in parotid) was positive for microscopic melanoma cells.
His melanoma was on his temple, all removed and all told 1.5mm (over twice what the shave said it was) and UT Southwestern thinks the surgeon did appropriate excision of 1cm. So for that we feel grateful and do not have to do another WLE.
I need some advice guys. We feel lost, helpless, and while I have been on this forum for weeks now he has not. We haven't really been able to talk about all of this until today. We are getting a 2nd opinion next week at Baylor (Dr. Cowler is who our ENT referred us to) and I understand there are some on this forum that are participating in Stage III trials at Baylor. I'm interested to hear if anyone has feedback on that. Also, UT Southwestern recommended a PET scan before we proceed with the moderate neck dissection to see if it has spread. Is this a normal course of action?
Thanks, sorry I'm all over the place. I honestly don't know if I can catch my breath still. I am trying to stay positive and let him know this isn't a death sentence and a lot is being done now to treat and prevent reoccurrence.
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- April 16, 2015 at 4:01 am
I think a pet scan is good idea so they know if he is NED no evidence of disease or not. I'm not sure about the various stages because I started stage 4 almost 22 months ago. Another good thing is md Anderson is only a few hours from Dallas and they are supposed to be a good place to go if you want another opinion.
Artie
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- April 16, 2015 at 4:01 am
I think a pet scan is good idea so they know if he is NED no evidence of disease or not. I'm not sure about the various stages because I started stage 4 almost 22 months ago. Another good thing is md Anderson is only a few hours from Dallas and they are supposed to be a good place to go if you want another opinion.
Artie
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- April 16, 2015 at 4:01 am
I think a pet scan is good idea so they know if he is NED no evidence of disease or not. I'm not sure about the various stages because I started stage 4 almost 22 months ago. Another good thing is md Anderson is only a few hours from Dallas and they are supposed to be a good place to go if you want another opinion.
Artie
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- April 16, 2015 at 12:00 pm
The early days are the worst part of this process – at least I think so. After more drs visits, info, and a plan things will calm down. Try every strategy you have to keep yourself sane – talk to friends, exercise, get some counseling, go out at night and howl at the moon – whatever works. Everyone has his/her own strategy and your husband's coping might be very different from yours.
There are many good, effective treatments for melanoma. Wait for the results of the PET before thinking of a next step. Keep posting and asking questions. There are so many knowledgeable people here.
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- April 16, 2015 at 12:00 pm
The early days are the worst part of this process – at least I think so. After more drs visits, info, and a plan things will calm down. Try every strategy you have to keep yourself sane – talk to friends, exercise, get some counseling, go out at night and howl at the moon – whatever works. Everyone has his/her own strategy and your husband's coping might be very different from yours.
There are many good, effective treatments for melanoma. Wait for the results of the PET before thinking of a next step. Keep posting and asking questions. There are so many knowledgeable people here.
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- April 16, 2015 at 12:00 pm
The early days are the worst part of this process – at least I think so. After more drs visits, info, and a plan things will calm down. Try every strategy you have to keep yourself sane – talk to friends, exercise, get some counseling, go out at night and howl at the moon – whatever works. Everyone has his/her own strategy and your husband's coping might be very different from yours.
There are many good, effective treatments for melanoma. Wait for the results of the PET before thinking of a next step. Keep posting and asking questions. There are so many knowledgeable people here.
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- April 16, 2015 at 2:06 pm
If you are talking about Dr. Cowey at Dallas Baylor Sammons, thats who my husband is seeing. He starts testing next monday and if all is good he should start the trial the following week. Speedster on here is also in the trial and he posted I think yesterday that he took his first infusion this week with dr cowey. Before my husband had surgery, he had a ultrasound, a fine needle biopdy of the swollen node, a ct of chest, abdomen, peliv, a mri of brain and a pet scan. All come back good except his neck area. Had surgery and 5 nodes postive. Then he was refered to dr cowey for the stage III completly resected trial.
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- April 16, 2015 at 2:06 pm
If you are talking about Dr. Cowey at Dallas Baylor Sammons, thats who my husband is seeing. He starts testing next monday and if all is good he should start the trial the following week. Speedster on here is also in the trial and he posted I think yesterday that he took his first infusion this week with dr cowey. Before my husband had surgery, he had a ultrasound, a fine needle biopdy of the swollen node, a ct of chest, abdomen, peliv, a mri of brain and a pet scan. All come back good except his neck area. Had surgery and 5 nodes postive. Then he was refered to dr cowey for the stage III completly resected trial.
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- April 16, 2015 at 2:06 pm
If you are talking about Dr. Cowey at Dallas Baylor Sammons, thats who my husband is seeing. He starts testing next monday and if all is good he should start the trial the following week. Speedster on here is also in the trial and he posted I think yesterday that he took his first infusion this week with dr cowey. Before my husband had surgery, he had a ultrasound, a fine needle biopdy of the swollen node, a ct of chest, abdomen, peliv, a mri of brain and a pet scan. All come back good except his neck area. Had surgery and 5 nodes postive. Then he was refered to dr cowey for the stage III completly resected trial.
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- April 16, 2015 at 2:27 pm
Aundrea – thank you for your post and for passing along your blog! We have an appointment with Dr. Cowey next Tuesday. It was recommended we do a PET from UT Southwestern but not MRI or CT or anything else. Did Dr. Cowey recommend you do those or was that from your other doctor?
Also, I heard that paralysis could be temporary. Holding out hope for you there and it sounds like he is on the mend.
Do you know how long he participates in the trial? Months/years? Congrats on having that option – medicine is moving fast on this one!
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- April 16, 2015 at 2:27 pm
Aundrea – thank you for your post and for passing along your blog! We have an appointment with Dr. Cowey next Tuesday. It was recommended we do a PET from UT Southwestern but not MRI or CT or anything else. Did Dr. Cowey recommend you do those or was that from your other doctor?
Also, I heard that paralysis could be temporary. Holding out hope for you there and it sounds like he is on the mend.
Do you know how long he participates in the trial? Months/years? Congrats on having that option – medicine is moving fast on this one!
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- April 16, 2015 at 2:27 pm
Aundrea – thank you for your post and for passing along your blog! We have an appointment with Dr. Cowey next Tuesday. It was recommended we do a PET from UT Southwestern but not MRI or CT or anything else. Did Dr. Cowey recommend you do those or was that from your other doctor?
Also, I heard that paralysis could be temporary. Holding out hope for you there and it sounds like he is on the mend.
Do you know how long he participates in the trial? Months/years? Congrats on having that option – medicine is moving fast on this one!
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- April 16, 2015 at 2:39 pm
We had quite a long journey before we made it to dr Cowey. We started here at our local hospital when i noticed my husbands neck looked swollen, he had a melanoma removed the first of 2014 and needed no further care. Well it come back. The dr at our local clinic ordered all the test except the mri and pet, once results were in he wanted him to follow up with the oncologist he met in 2014. From there that oncologist ordered the mri and pet. Then he had surgery. His ENT was dr lance oxford. He had surgery 25th of feb 2015, then went back to regular oncologist who gave options of radiation and interferon or go see dr cowey. We opted for dr cowey. He was very helpful, very nice. It took a full day of talking to him then we signed consent forms. My husband will go to dr cowey this monday and do labs, ct of chest abdomen pelvic, meet with dr cowey, ekg and a mri. After all that in 1 day, he will start the trial the following week. If you look at my blog, i posted the trial and you can click on it and read about it. From what I understand its a full year of either every 2 or every 3 weeks 1 time a week depending on what drug he gets. Wher are you from if you dont mind me asking!
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- April 16, 2015 at 3:29 pm
Great information Aundrea. I live in Garland right outside of Dallas. Dr. Oxford did my husband's WLE and SNB last Friday (which came back positive). He did not take the 2nd node because it was further down in his neck and it wasn't showing up as hot as the one by the parotid. I was wondering if he would be the one who would do the modified dissection and he was the one that referred us to Dr. Cowey. My husband owns his own business and is trying to see how long we need to plan for him to be out of work. It looks like it was a week or so before the drains came out? Sorry for the zillion questions – we are obviously planning for great scans so that we can do this surgical option and hopefully get into a trial.
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- April 16, 2015 at 3:29 pm
Great information Aundrea. I live in Garland right outside of Dallas. Dr. Oxford did my husband's WLE and SNB last Friday (which came back positive). He did not take the 2nd node because it was further down in his neck and it wasn't showing up as hot as the one by the parotid. I was wondering if he would be the one who would do the modified dissection and he was the one that referred us to Dr. Cowey. My husband owns his own business and is trying to see how long we need to plan for him to be out of work. It looks like it was a week or so before the drains came out? Sorry for the zillion questions – we are obviously planning for great scans so that we can do this surgical option and hopefully get into a trial.
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- April 16, 2015 at 3:29 pm
Great information Aundrea. I live in Garland right outside of Dallas. Dr. Oxford did my husband's WLE and SNB last Friday (which came back positive). He did not take the 2nd node because it was further down in his neck and it wasn't showing up as hot as the one by the parotid. I was wondering if he would be the one who would do the modified dissection and he was the one that referred us to Dr. Cowey. My husband owns his own business and is trying to see how long we need to plan for him to be out of work. It looks like it was a week or so before the drains came out? Sorry for the zillion questions – we are obviously planning for great scans so that we can do this surgical option and hopefully get into a trial.
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- April 16, 2015 at 5:14 pm
We live in Sulphur Springs. Not far from ya! My husband had surgery on Wednesday, come home Friday and had drains out the next Tuesday. He about come unglued when Dr. pulled one of his tubes out and it hit a nerve. Its took him about 1 month to get strength back. He still has some discomfort when he wakes up from sleeping on it. I have pictures on my blog as well from start to finish. He was out of work about 3 weeks and had no therapy. We are kind of in limbo right now with not knowing how he will feel with the trial meds. We just bought our first house 4 years ago and bought a new car 2 weeks before we fouf out his cancer returned. My husband had part of his parotid gland out and it contained the nerve to bottom half of lip, he has droopy lip now, you cant tell unless you know, but thats fine. We will do what we can to win this battle. So glad to meet others in our area. We are young, im 31, husband is 34 and kids 11 and 7.
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- April 16, 2015 at 5:14 pm
We live in Sulphur Springs. Not far from ya! My husband had surgery on Wednesday, come home Friday and had drains out the next Tuesday. He about come unglued when Dr. pulled one of his tubes out and it hit a nerve. Its took him about 1 month to get strength back. He still has some discomfort when he wakes up from sleeping on it. I have pictures on my blog as well from start to finish. He was out of work about 3 weeks and had no therapy. We are kind of in limbo right now with not knowing how he will feel with the trial meds. We just bought our first house 4 years ago and bought a new car 2 weeks before we fouf out his cancer returned. My husband had part of his parotid gland out and it contained the nerve to bottom half of lip, he has droopy lip now, you cant tell unless you know, but thats fine. We will do what we can to win this battle. So glad to meet others in our area. We are young, im 31, husband is 34 and kids 11 and 7.
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- April 16, 2015 at 5:14 pm
We live in Sulphur Springs. Not far from ya! My husband had surgery on Wednesday, come home Friday and had drains out the next Tuesday. He about come unglued when Dr. pulled one of his tubes out and it hit a nerve. Its took him about 1 month to get strength back. He still has some discomfort when he wakes up from sleeping on it. I have pictures on my blog as well from start to finish. He was out of work about 3 weeks and had no therapy. We are kind of in limbo right now with not knowing how he will feel with the trial meds. We just bought our first house 4 years ago and bought a new car 2 weeks before we fouf out his cancer returned. My husband had part of his parotid gland out and it contained the nerve to bottom half of lip, he has droopy lip now, you cant tell unless you know, but thats fine. We will do what we can to win this battle. So glad to meet others in our area. We are young, im 31, husband is 34 and kids 11 and 7.
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- April 16, 2015 at 7:38 pm
We have young kids as well – he and I are 38 with 3 boys all under 7. This is such a tough time and I know we will get through it. Honestly, the waiting is terrible. We have a trip to take next month that we planned for he and I to get away w/out the kiddos….now we are on the fence if we do the surgery before we go or after as we don't want to prolong this too much.
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- April 16, 2015 at 7:38 pm
We have young kids as well – he and I are 38 with 3 boys all under 7. This is such a tough time and I know we will get through it. Honestly, the waiting is terrible. We have a trip to take next month that we planned for he and I to get away w/out the kiddos….now we are on the fence if we do the surgery before we go or after as we don't want to prolong this too much.
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- April 16, 2015 at 7:38 pm
We have young kids as well – he and I are 38 with 3 boys all under 7. This is such a tough time and I know we will get through it. Honestly, the waiting is terrible. We have a trip to take next month that we planned for he and I to get away w/out the kiddos….now we are on the fence if we do the surgery before we go or after as we don't want to prolong this too much.
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- April 16, 2015 at 8:01 pm
After surgery, my husband lost some weight. I started him on ensure and it seemed to help alot. He just lost his apetite form being in so much pain. We also try not to get around sick people because they can be more prone to infections. I do know that you have to start the trial within 12 weeks of surgery so make sure if the trial is something yall are eligable for that you dont get to far from home! Best wishes on this journey! Stay in touch!
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- April 16, 2015 at 8:01 pm
After surgery, my husband lost some weight. I started him on ensure and it seemed to help alot. He just lost his apetite form being in so much pain. We also try not to get around sick people because they can be more prone to infections. I do know that you have to start the trial within 12 weeks of surgery so make sure if the trial is something yall are eligable for that you dont get to far from home! Best wishes on this journey! Stay in touch!
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- April 16, 2015 at 8:01 pm
After surgery, my husband lost some weight. I started him on ensure and it seemed to help alot. He just lost his apetite form being in so much pain. We also try not to get around sick people because they can be more prone to infections. I do know that you have to start the trial within 12 weeks of surgery so make sure if the trial is something yall are eligable for that you dont get to far from home! Best wishes on this journey! Stay in touch!
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- April 16, 2015 at 2:39 pm
We had quite a long journey before we made it to dr Cowey. We started here at our local hospital when i noticed my husbands neck looked swollen, he had a melanoma removed the first of 2014 and needed no further care. Well it come back. The dr at our local clinic ordered all the test except the mri and pet, once results were in he wanted him to follow up with the oncologist he met in 2014. From there that oncologist ordered the mri and pet. Then he had surgery. His ENT was dr lance oxford. He had surgery 25th of feb 2015, then went back to regular oncologist who gave options of radiation and interferon or go see dr cowey. We opted for dr cowey. He was very helpful, very nice. It took a full day of talking to him then we signed consent forms. My husband will go to dr cowey this monday and do labs, ct of chest abdomen pelvic, meet with dr cowey, ekg and a mri. After all that in 1 day, he will start the trial the following week. If you look at my blog, i posted the trial and you can click on it and read about it. From what I understand its a full year of either every 2 or every 3 weeks 1 time a week depending on what drug he gets. Wher are you from if you dont mind me asking!
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- April 16, 2015 at 2:39 pm
We had quite a long journey before we made it to dr Cowey. We started here at our local hospital when i noticed my husbands neck looked swollen, he had a melanoma removed the first of 2014 and needed no further care. Well it come back. The dr at our local clinic ordered all the test except the mri and pet, once results were in he wanted him to follow up with the oncologist he met in 2014. From there that oncologist ordered the mri and pet. Then he had surgery. His ENT was dr lance oxford. He had surgery 25th of feb 2015, then went back to regular oncologist who gave options of radiation and interferon or go see dr cowey. We opted for dr cowey. He was very helpful, very nice. It took a full day of talking to him then we signed consent forms. My husband will go to dr cowey this monday and do labs, ct of chest abdomen pelvic, meet with dr cowey, ekg and a mri. After all that in 1 day, he will start the trial the following week. If you look at my blog, i posted the trial and you can click on it and read about it. From what I understand its a full year of either every 2 or every 3 weeks 1 time a week depending on what drug he gets. Wher are you from if you dont mind me asking!
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- April 17, 2015 at 3:59 am
Dr. Cowey was recommended to me by Dr. Fleming, who Cowey trained with/under at MD Anderson. I met with him twice and as I'm an engineer by education and a structured finance and CEO by vocation, my mom said that Dr. Cowey survived my "waterboarding of questions" well. She was very pleased with his intellect and his care. My son who has studied bio-chemistry and now chemistry at Trinity Univeristy was also impressed with him.
Here over 48 hours later, the side effects are settling in a bit. Joint pain, headache, prickly and itching skin. Nothing to bad, just a bit concerning, yet expected.
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- April 17, 2015 at 12:56 pm
Thanks Speedster – I'm glad to know others that are under his care as we will meet on Tuesday. Dr. Oxford (ENT) recommended we meet with him so I'm eager to get that going.
Thanks for sharing your side effects, anything you can do to alleviate them – ibuprofen/aleve? I heard some others on the forum are using prednisone for itching (I think).
I too am an Engineer and my line of questioning is coming in handy. 🙂 I can't get enough information about this as again – we are each our own advocate. I wish you the all the best!!!!!
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- April 23, 2015 at 2:50 am
What's the latest? Is your husband having any future surgey after the positive SNB? I had a complete resection of all of the nodes in my left arm pit where they found another node involved.
After round one in the ipi vs. nivo trial, I'm struggline a bit, yet am hoping to stay on top of the side effects, that I have to learn to count them as a blessing as they are the sign that drug is working.
Is your husbank going to enter the trial?
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- April 23, 2015 at 1:07 pm
Speedster – thanks for responding. We met with Dr. Cowey this week and couldn’t agree more with your assessment. He is our doctor of choice to help us through this journey. My husband, Todd, is having his CLND and partial parotidectomy this coming Monday and he too will enter the trial after he recovers. He is 3B right now and hoping we stay that way. The PET was clear yesterday and we really feel now like we have an opportunity to fight back – scheduling the surgery was a privilege if I’m honest. We had another doctor tell us not to do that until the PET was clear so we sweated that for a bit. I’ve seen some of the same comments that other drugs are faring better than Yervoy. Not knowing which drug he is getting is challenging the inner-control-freak in me but it’s an opportunity we gladly take.
When was your surgery – are you feeling better from that? I wish you all the best in the trial and with the side effects….here’s to hoping they settle down a bit and we see awesome results!!!!
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- April 23, 2015 at 1:07 pm
Speedster – thanks for responding. We met with Dr. Cowey this week and couldn’t agree more with your assessment. He is our doctor of choice to help us through this journey. My husband, Todd, is having his CLND and partial parotidectomy this coming Monday and he too will enter the trial after he recovers. He is 3B right now and hoping we stay that way. The PET was clear yesterday and we really feel now like we have an opportunity to fight back – scheduling the surgery was a privilege if I’m honest. We had another doctor tell us not to do that until the PET was clear so we sweated that for a bit. I’ve seen some of the same comments that other drugs are faring better than Yervoy. Not knowing which drug he is getting is challenging the inner-control-freak in me but it’s an opportunity we gladly take.
When was your surgery – are you feeling better from that? I wish you all the best in the trial and with the side effects….here’s to hoping they settle down a bit and we see awesome results!!!!
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- April 23, 2015 at 1:07 pm
Speedster – thanks for responding. We met with Dr. Cowey this week and couldn’t agree more with your assessment. He is our doctor of choice to help us through this journey. My husband, Todd, is having his CLND and partial parotidectomy this coming Monday and he too will enter the trial after he recovers. He is 3B right now and hoping we stay that way. The PET was clear yesterday and we really feel now like we have an opportunity to fight back – scheduling the surgery was a privilege if I’m honest. We had another doctor tell us not to do that until the PET was clear so we sweated that for a bit. I’ve seen some of the same comments that other drugs are faring better than Yervoy. Not knowing which drug he is getting is challenging the inner-control-freak in me but it’s an opportunity we gladly take.
When was your surgery – are you feeling better from that? I wish you all the best in the trial and with the side effects….here’s to hoping they settle down a bit and we see awesome results!!!!
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- April 23, 2015 at 2:50 am
What's the latest? Is your husband having any future surgey after the positive SNB? I had a complete resection of all of the nodes in my left arm pit where they found another node involved.
After round one in the ipi vs. nivo trial, I'm struggline a bit, yet am hoping to stay on top of the side effects, that I have to learn to count them as a blessing as they are the sign that drug is working.
Is your husbank going to enter the trial?
-
- April 23, 2015 at 2:50 am
What's the latest? Is your husband having any future surgey after the positive SNB? I had a complete resection of all of the nodes in my left arm pit where they found another node involved.
After round one in the ipi vs. nivo trial, I'm struggline a bit, yet am hoping to stay on top of the side effects, that I have to learn to count them as a blessing as they are the sign that drug is working.
Is your husbank going to enter the trial?
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- April 17, 2015 at 12:56 pm
Thanks Speedster – I'm glad to know others that are under his care as we will meet on Tuesday. Dr. Oxford (ENT) recommended we meet with him so I'm eager to get that going.
Thanks for sharing your side effects, anything you can do to alleviate them – ibuprofen/aleve? I heard some others on the forum are using prednisone for itching (I think).
I too am an Engineer and my line of questioning is coming in handy. 🙂 I can't get enough information about this as again – we are each our own advocate. I wish you the all the best!!!!!
-
- April 17, 2015 at 12:56 pm
Thanks Speedster – I'm glad to know others that are under his care as we will meet on Tuesday. Dr. Oxford (ENT) recommended we meet with him so I'm eager to get that going.
Thanks for sharing your side effects, anything you can do to alleviate them – ibuprofen/aleve? I heard some others on the forum are using prednisone for itching (I think).
I too am an Engineer and my line of questioning is coming in handy. 🙂 I can't get enough information about this as again – we are each our own advocate. I wish you the all the best!!!!!
-
- April 17, 2015 at 3:59 am
Dr. Cowey was recommended to me by Dr. Fleming, who Cowey trained with/under at MD Anderson. I met with him twice and as I'm an engineer by education and a structured finance and CEO by vocation, my mom said that Dr. Cowey survived my "waterboarding of questions" well. She was very pleased with his intellect and his care. My son who has studied bio-chemistry and now chemistry at Trinity Univeristy was also impressed with him.
Here over 48 hours later, the side effects are settling in a bit. Joint pain, headache, prickly and itching skin. Nothing to bad, just a bit concerning, yet expected.
-
- April 17, 2015 at 3:59 am
Dr. Cowey was recommended to me by Dr. Fleming, who Cowey trained with/under at MD Anderson. I met with him twice and as I'm an engineer by education and a structured finance and CEO by vocation, my mom said that Dr. Cowey survived my "waterboarding of questions" well. She was very pleased with his intellect and his care. My son who has studied bio-chemistry and now chemistry at Trinity Univeristy was also impressed with him.
Here over 48 hours later, the side effects are settling in a bit. Joint pain, headache, prickly and itching skin. Nothing to bad, just a bit concerning, yet expected.
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- April 16, 2015 at 8:49 pm
As a fellow Texan, y'all are in my thoughts. Nothing but good vibes for you.
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- April 16, 2015 at 8:49 pm
As a fellow Texan, y'all are in my thoughts. Nothing but good vibes for you.
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- April 16, 2015 at 8:49 pm
As a fellow Texan, y'all are in my thoughts. Nothing but good vibes for you.
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