› Forums › Caregiver Community › Set back for my wife needing some help, direction etc..
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POW.
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- May 6, 2013 at 4:20 am
Posted several updates since my wife was diagnosed Dec. 7 2012. Her oncology staff is at Moffitt in Tampa Fl. She had 1 spot treated on brain with radiation and completed her round of IPI treatments 03/19/13. During the IPI treatment a tumor inflammed in the throat tonsil area causing swallowing and eating issues. It was decided to have the tumor removed as much as possible. That was removed on 04/09/13. Her follow up scans showed 6 small new spots on brain and several new spots around body/organs. There was very little shrinkage if any on original tumors.
Posted several updates since my wife was diagnosed Dec. 7 2012. Her oncology staff is at Moffitt in Tampa Fl. She had 1 spot treated on brain with radiation and completed her round of IPI treatments 03/19/13. During the IPI treatment a tumor inflammed in the throat tonsil area causing swallowing and eating issues. It was decided to have the tumor removed as much as possible. That was removed on 04/09/13. Her follow up scans showed 6 small new spots on brain and several new spots around body/organs. There was very little shrinkage if any on original tumors. She started WBR 10 treatments on 04/26/13 and was prescribed Temador to take while WBR. During the past 4 to 5 weeks she was complaining about sever stomach pains which gas X and bentyl seemed to be helping. while driving to our WBR appt. on 04/29 her stomach pain was sever enough to put her in tears. Right after her radiation she was admitted to Moffitt. The stomach scan showed intussusception caused by a tumor. On 4/30 the whole team from radition, oncology,GI, social worker meet with us at our room to discuss our options. I knew with this many ppl coming in that someting was not going to be easy. The surgeon explained that the surgery for the intussusception would relieve her current problem but wanted us to relize that due to the amount of cancer that he couldnt fix everything. The doctors discussed with us that the surgery would limit the future systemic treatments until healed and even then the history of both surgery could stop her qualifiying. They started talking with us about quality of life and they feel her time now might be shortened. They gave us an option to do the surgery or return home and suffer through the pain and naussea until a trial would be available. It was also suggested as a plan to start meeting with Hospice so we are fimiliar with the caregivers there and how the programs there could help our family through all this no matter if we elect surgery now or not. Within a 15 min talk my wife and i were floored. She is 35 yrs old and still going strong, working , walking, house keeping etc. I was thinking WTH just happended. Surgery , no surgery, hospice, shorten time.. how can you handle this all at once. We have always been determined to win. We choose to do the surgery so she could eat and not have the stomach pain. It was done within 4 hours of us approving. She is at Moffitt now in recover. We agreed to meet with Hospice once we get home to understand their program. I would think IPI is still in her system and will still help. she has continued the WBR and has 3 more treatments this week. We dont plan on sitting still. The oncology team said make a full recovery from this surgery which could take 30 days then they could review and determine if another systemic treatment could help. What treatement should we be looking at. How can things be to this degree? Scared and confussed…
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- May 6, 2013 at 10:19 am
Brian,
I am so very sorry for all that you and your wife are going through. Sometimes I think it is almost harder to be a caretaker, rather than the patient, since I know you feel that there is so little that you can do. I don't really have any suggestions for care. Melanoma doesn't play fair. But, you are at a good place to deal with all of your problems at hand. Your wife is clearly a courageous person and she has an incredible supporter in you. Hang in there. Hopefully, she will be able to complete the treatment plan she has started, healing from the surgery will take place quickly, and the folks at Moffitt can come up with another step for you both. Yours, Celeste
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- May 6, 2013 at 10:19 am
Brian,
I am so very sorry for all that you and your wife are going through. Sometimes I think it is almost harder to be a caretaker, rather than the patient, since I know you feel that there is so little that you can do. I don't really have any suggestions for care. Melanoma doesn't play fair. But, you are at a good place to deal with all of your problems at hand. Your wife is clearly a courageous person and she has an incredible supporter in you. Hang in there. Hopefully, she will be able to complete the treatment plan she has started, healing from the surgery will take place quickly, and the folks at Moffitt can come up with another step for you both. Yours, Celeste
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- May 6, 2013 at 10:19 am
Brian,
I am so very sorry for all that you and your wife are going through. Sometimes I think it is almost harder to be a caretaker, rather than the patient, since I know you feel that there is so little that you can do. I don't really have any suggestions for care. Melanoma doesn't play fair. But, you are at a good place to deal with all of your problems at hand. Your wife is clearly a courageous person and she has an incredible supporter in you. Hang in there. Hopefully, she will be able to complete the treatment plan she has started, healing from the surgery will take place quickly, and the folks at Moffitt can come up with another step for you both. Yours, Celeste
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- May 6, 2013 at 11:16 am
Oh Brian, I'm so sorry. I know Moffitt is a good place, but it seems in this case that they're not being aggressive. Has anyone suggested IL-2? What about Zelboraf – has she been tested for the mutation? Search here for more information about these treatments as I am not well informed. Are you comfortable with your dr. and your team? Keeping you in my prayers.
Fen
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- May 17, 2013 at 2:51 pm
The doctor and team have been great. Zelboraf was not an option due to her BRAF gene. Her doctors strongly thought the IPI was our best option with the Anti Pd 1 as the next step. In some areas the IPI seems to have done some good but the cancer had the head start and was on multiple organs. We are hoping the IPI will continue to push the immunity system and her recover will be speedy. The faster she recovers the sooner we can get back on track. The name Hospice was very scary to us but now we have met some great new ppl that are cheering for us to win. thanks for your thoughts and prayers.
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- May 17, 2013 at 2:51 pm
The doctor and team have been great. Zelboraf was not an option due to her BRAF gene. Her doctors strongly thought the IPI was our best option with the Anti Pd 1 as the next step. In some areas the IPI seems to have done some good but the cancer had the head start and was on multiple organs. We are hoping the IPI will continue to push the immunity system and her recover will be speedy. The faster she recovers the sooner we can get back on track. The name Hospice was very scary to us but now we have met some great new ppl that are cheering for us to win. thanks for your thoughts and prayers.
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- May 17, 2013 at 2:51 pm
The doctor and team have been great. Zelboraf was not an option due to her BRAF gene. Her doctors strongly thought the IPI was our best option with the Anti Pd 1 as the next step. In some areas the IPI seems to have done some good but the cancer had the head start and was on multiple organs. We are hoping the IPI will continue to push the immunity system and her recover will be speedy. The faster she recovers the sooner we can get back on track. The name Hospice was very scary to us but now we have met some great new ppl that are cheering for us to win. thanks for your thoughts and prayers.
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- May 6, 2013 at 11:16 am
Oh Brian, I'm so sorry. I know Moffitt is a good place, but it seems in this case that they're not being aggressive. Has anyone suggested IL-2? What about Zelboraf – has she been tested for the mutation? Search here for more information about these treatments as I am not well informed. Are you comfortable with your dr. and your team? Keeping you in my prayers.
Fen
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- May 6, 2013 at 11:16 am
Oh Brian, I'm so sorry. I know Moffitt is a good place, but it seems in this case that they're not being aggressive. Has anyone suggested IL-2? What about Zelboraf – has she been tested for the mutation? Search here for more information about these treatments as I am not well informed. Are you comfortable with your dr. and your team? Keeping you in my prayers.
Fen
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- May 6, 2013 at 11:21 am
I am So sorry for all of this you guys are going through. I HATE how melanoma can just change our lives overnight in such drastic ways. I am absolutely certain we would have done the very same thing ( have the surgery) to aleviate the severe symptoms, and added potential of problems from not being able to eat, etc. Moffit is a great place to be and it sounds like they will be doing everything possible to work together for the best plan of action. The IPI can continue to have an effect for a very long time because your immune system is actually changed by it. I am not any help when it comes to clinical trials, but have heard some very promising things abt the anti-PD1. Others here know about trials and how to find them. One thing, though, it seems to me like exploring all those options while she is recovering from surgery could help a quicker entry into possible trials once her recovery is sufficient. She is fortunate to have you working on her behalf to find out all you can. There are also stories on this board from people who had been given little hope and yet survive to tell about it. Take hope from that, and share that with her, as well. It is just so terribly frightening at times. These days of melanoma treatment do lend themselves to options, unlike several years ago when there really was not much of anything. I am sure you will get great help from people here who have also walked this scary road.
Tina
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- May 6, 2013 at 11:21 am
I am So sorry for all of this you guys are going through. I HATE how melanoma can just change our lives overnight in such drastic ways. I am absolutely certain we would have done the very same thing ( have the surgery) to aleviate the severe symptoms, and added potential of problems from not being able to eat, etc. Moffit is a great place to be and it sounds like they will be doing everything possible to work together for the best plan of action. The IPI can continue to have an effect for a very long time because your immune system is actually changed by it. I am not any help when it comes to clinical trials, but have heard some very promising things abt the anti-PD1. Others here know about trials and how to find them. One thing, though, it seems to me like exploring all those options while she is recovering from surgery could help a quicker entry into possible trials once her recovery is sufficient. She is fortunate to have you working on her behalf to find out all you can. There are also stories on this board from people who had been given little hope and yet survive to tell about it. Take hope from that, and share that with her, as well. It is just so terribly frightening at times. These days of melanoma treatment do lend themselves to options, unlike several years ago when there really was not much of anything. I am sure you will get great help from people here who have also walked this scary road.
Tina
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- May 6, 2013 at 11:21 am
I am So sorry for all of this you guys are going through. I HATE how melanoma can just change our lives overnight in such drastic ways. I am absolutely certain we would have done the very same thing ( have the surgery) to aleviate the severe symptoms, and added potential of problems from not being able to eat, etc. Moffit is a great place to be and it sounds like they will be doing everything possible to work together for the best plan of action. The IPI can continue to have an effect for a very long time because your immune system is actually changed by it. I am not any help when it comes to clinical trials, but have heard some very promising things abt the anti-PD1. Others here know about trials and how to find them. One thing, though, it seems to me like exploring all those options while she is recovering from surgery could help a quicker entry into possible trials once her recovery is sufficient. She is fortunate to have you working on her behalf to find out all you can. There are also stories on this board from people who had been given little hope and yet survive to tell about it. Take hope from that, and share that with her, as well. It is just so terribly frightening at times. These days of melanoma treatment do lend themselves to options, unlike several years ago when there really was not much of anything. I am sure you will get great help from people here who have also walked this scary road.
Tina
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- May 6, 2013 at 12:52 pm
Oh, Brian! I am so sorry that you and your wife have to go through all this! I really feel for you and your wife.
Although I am not a physician, in my opinion deciding to have the surgery was exactly the right thing to do. In the first place, the absolutely best treatment for melanoma is your own immune system. That means keeping the body healthy and getting proper nutrition. Being able to eat comfortably and digest your food completely is critical. So the surgery was a good move. In addition, suffering pain like your wife was suffering is physically, mentally, and emotionally debilitating. Who could maintain a positive mental attitude with that going on? No. Suffering like that "until a trial becomes available" would be cruel and counter-productive.
You have now experienced the worst kick in the stomach that you will ever experience on this melanoma journey– the day the doctors tell you that the prognosis is bleak. That is, indeed, an emotional game-changer. I am glad that you will be signing up with a hospice organization. As a caregiver, I found their help, experience, and support very comforting. At least there was SOMEONE I could call on when I was frightened, confused, or despairing. They always responded and they were always helpful.
As for possible future clinical trials, I suggest you look for Phase 1 trials. I'm not usually a fan of Phase 1 trials because the doctors have no idea whether or not the treatment will work or what the side effects will be– that is the definition of Phase 1. But the good things about Phase 1 is that the patient is guaranteed to get the treatment (i.e., no control group) and they often accept patients who are considered inelegible for Phase 2 or 3 trials. Since your wife's melanoma seems to be particularly aggressive, I suggest you check out Phase 1s.
Don't give up the fight. Check into her clinical trial options. Amazing recoveries do happen. But at the same time, try to focus on keeping your wife comfortable and on enjoying and appreciating every new day. Get out and do all the fun things you can. Take the time to visit with friends and family. Enjoy the sunshine and smell the roses. I know how miserable this journey is, and I will be praying for the both of you.
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- May 6, 2013 at 12:52 pm
Oh, Brian! I am so sorry that you and your wife have to go through all this! I really feel for you and your wife.
Although I am not a physician, in my opinion deciding to have the surgery was exactly the right thing to do. In the first place, the absolutely best treatment for melanoma is your own immune system. That means keeping the body healthy and getting proper nutrition. Being able to eat comfortably and digest your food completely is critical. So the surgery was a good move. In addition, suffering pain like your wife was suffering is physically, mentally, and emotionally debilitating. Who could maintain a positive mental attitude with that going on? No. Suffering like that "until a trial becomes available" would be cruel and counter-productive.
You have now experienced the worst kick in the stomach that you will ever experience on this melanoma journey– the day the doctors tell you that the prognosis is bleak. That is, indeed, an emotional game-changer. I am glad that you will be signing up with a hospice organization. As a caregiver, I found their help, experience, and support very comforting. At least there was SOMEONE I could call on when I was frightened, confused, or despairing. They always responded and they were always helpful.
As for possible future clinical trials, I suggest you look for Phase 1 trials. I'm not usually a fan of Phase 1 trials because the doctors have no idea whether or not the treatment will work or what the side effects will be– that is the definition of Phase 1. But the good things about Phase 1 is that the patient is guaranteed to get the treatment (i.e., no control group) and they often accept patients who are considered inelegible for Phase 2 or 3 trials. Since your wife's melanoma seems to be particularly aggressive, I suggest you check out Phase 1s.
Don't give up the fight. Check into her clinical trial options. Amazing recoveries do happen. But at the same time, try to focus on keeping your wife comfortable and on enjoying and appreciating every new day. Get out and do all the fun things you can. Take the time to visit with friends and family. Enjoy the sunshine and smell the roses. I know how miserable this journey is, and I will be praying for the both of you.
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- May 6, 2013 at 12:52 pm
Oh, Brian! I am so sorry that you and your wife have to go through all this! I really feel for you and your wife.
Although I am not a physician, in my opinion deciding to have the surgery was exactly the right thing to do. In the first place, the absolutely best treatment for melanoma is your own immune system. That means keeping the body healthy and getting proper nutrition. Being able to eat comfortably and digest your food completely is critical. So the surgery was a good move. In addition, suffering pain like your wife was suffering is physically, mentally, and emotionally debilitating. Who could maintain a positive mental attitude with that going on? No. Suffering like that "until a trial becomes available" would be cruel and counter-productive.
You have now experienced the worst kick in the stomach that you will ever experience on this melanoma journey– the day the doctors tell you that the prognosis is bleak. That is, indeed, an emotional game-changer. I am glad that you will be signing up with a hospice organization. As a caregiver, I found their help, experience, and support very comforting. At least there was SOMEONE I could call on when I was frightened, confused, or despairing. They always responded and they were always helpful.
As for possible future clinical trials, I suggest you look for Phase 1 trials. I'm not usually a fan of Phase 1 trials because the doctors have no idea whether or not the treatment will work or what the side effects will be– that is the definition of Phase 1. But the good things about Phase 1 is that the patient is guaranteed to get the treatment (i.e., no control group) and they often accept patients who are considered inelegible for Phase 2 or 3 trials. Since your wife's melanoma seems to be particularly aggressive, I suggest you check out Phase 1s.
Don't give up the fight. Check into her clinical trial options. Amazing recoveries do happen. But at the same time, try to focus on keeping your wife comfortable and on enjoying and appreciating every new day. Get out and do all the fun things you can. Take the time to visit with friends and family. Enjoy the sunshine and smell the roses. I know how miserable this journey is, and I will be praying for the both of you.
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- May 17, 2013 at 2:43 pm
Thanks to everyone for the thoughts and prayers. We are back home now and Keri seems to be doing very well considering what we were told before surgery. She has been out with friends and family for short outings or lunches. she did complete her WBR. The only side effect was hair loss and a very itchy scalp. We go back on the 23rd for surgery follow up. Hospice has started coming by for weekly check up and have been great. I will talk with the oncologist about phase 1 trials on the 23rd. I know there was a trial starting up in the next 30 days that is similiar to the current Anti pd 1 but by a different manufacture. That was the direction we have been heading before the surgery. I would like to get back on that path. Again thanks for the responses.
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- May 18, 2013 at 1:37 am
Brian, I am happy to hear that Keri is recovering quickly from her abdominal surgery and is already able to go out for short outings. That is wonderful! I sure hope that her pain is gone, too. I am also glad that you sisgned up with a good hospice organization. They are not "angels of death". They are just people who have a special gift and special training to deal with the logistical and emotional consquences of life-threatening illnesses.
Our family had to force ourselves to take advantage of the services hospice offered thinking that we could do it all ourselves. But the more we let them help us, the more reassured we felt. For example, my brother had a very large pill box and required many different medications– some in the morning, some 3 times a day, some two pills once a day, and so on. After his WBR he would sometimes get confused about the pills. So eventually he allowed the hospice nurse to fill his pill box for him each week. She also order prescription refills well in advance (something my brother didn't always do.) Refilling medications and filling the pill box were then things he didn't have to worry about (and neither did his caretakers!). My brother couldn't drive for a while but he hated to ask for rides. So the hospice social worker got him a pass to take the free medi-van back and forth to the hospital for routine blood work and doctor visits. It picked him up at home and took him directly to the hospital clilnic entrance and then home again. He was quite able to go alone and didn't NEED a family member to be there, he just couldn't drive. So the medi-van gave him his independence and freed up the rest of the family from this task. Just a lot of things like that.
I wish Keri continued good recovery and I'll keep my fingers crossed that you and her doctors will be able to find a promising new clinical trial for her. One of the new drugs in development might be just the thing that will kick mel's butt for her!!
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- May 18, 2013 at 1:37 am
Brian, I am happy to hear that Keri is recovering quickly from her abdominal surgery and is already able to go out for short outings. That is wonderful! I sure hope that her pain is gone, too. I am also glad that you sisgned up with a good hospice organization. They are not "angels of death". They are just people who have a special gift and special training to deal with the logistical and emotional consquences of life-threatening illnesses.
Our family had to force ourselves to take advantage of the services hospice offered thinking that we could do it all ourselves. But the more we let them help us, the more reassured we felt. For example, my brother had a very large pill box and required many different medications– some in the morning, some 3 times a day, some two pills once a day, and so on. After his WBR he would sometimes get confused about the pills. So eventually he allowed the hospice nurse to fill his pill box for him each week. She also order prescription refills well in advance (something my brother didn't always do.) Refilling medications and filling the pill box were then things he didn't have to worry about (and neither did his caretakers!). My brother couldn't drive for a while but he hated to ask for rides. So the hospice social worker got him a pass to take the free medi-van back and forth to the hospital for routine blood work and doctor visits. It picked him up at home and took him directly to the hospital clilnic entrance and then home again. He was quite able to go alone and didn't NEED a family member to be there, he just couldn't drive. So the medi-van gave him his independence and freed up the rest of the family from this task. Just a lot of things like that.
I wish Keri continued good recovery and I'll keep my fingers crossed that you and her doctors will be able to find a promising new clinical trial for her. One of the new drugs in development might be just the thing that will kick mel's butt for her!!
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- May 18, 2013 at 1:37 am
Brian, I am happy to hear that Keri is recovering quickly from her abdominal surgery and is already able to go out for short outings. That is wonderful! I sure hope that her pain is gone, too. I am also glad that you sisgned up with a good hospice organization. They are not "angels of death". They are just people who have a special gift and special training to deal with the logistical and emotional consquences of life-threatening illnesses.
Our family had to force ourselves to take advantage of the services hospice offered thinking that we could do it all ourselves. But the more we let them help us, the more reassured we felt. For example, my brother had a very large pill box and required many different medications– some in the morning, some 3 times a day, some two pills once a day, and so on. After his WBR he would sometimes get confused about the pills. So eventually he allowed the hospice nurse to fill his pill box for him each week. She also order prescription refills well in advance (something my brother didn't always do.) Refilling medications and filling the pill box were then things he didn't have to worry about (and neither did his caretakers!). My brother couldn't drive for a while but he hated to ask for rides. So the hospice social worker got him a pass to take the free medi-van back and forth to the hospital for routine blood work and doctor visits. It picked him up at home and took him directly to the hospital clilnic entrance and then home again. He was quite able to go alone and didn't NEED a family member to be there, he just couldn't drive. So the medi-van gave him his independence and freed up the rest of the family from this task. Just a lot of things like that.
I wish Keri continued good recovery and I'll keep my fingers crossed that you and her doctors will be able to find a promising new clinical trial for her. One of the new drugs in development might be just the thing that will kick mel's butt for her!!
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- May 17, 2013 at 2:43 pm
Thanks to everyone for the thoughts and prayers. We are back home now and Keri seems to be doing very well considering what we were told before surgery. She has been out with friends and family for short outings or lunches. she did complete her WBR. The only side effect was hair loss and a very itchy scalp. We go back on the 23rd for surgery follow up. Hospice has started coming by for weekly check up and have been great. I will talk with the oncologist about phase 1 trials on the 23rd. I know there was a trial starting up in the next 30 days that is similiar to the current Anti pd 1 but by a different manufacture. That was the direction we have been heading before the surgery. I would like to get back on that path. Again thanks for the responses.
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- May 17, 2013 at 2:43 pm
Thanks to everyone for the thoughts and prayers. We are back home now and Keri seems to be doing very well considering what we were told before surgery. She has been out with friends and family for short outings or lunches. she did complete her WBR. The only side effect was hair loss and a very itchy scalp. We go back on the 23rd for surgery follow up. Hospice has started coming by for weekly check up and have been great. I will talk with the oncologist about phase 1 trials on the 23rd. I know there was a trial starting up in the next 30 days that is similiar to the current Anti pd 1 but by a different manufacture. That was the direction we have been heading before the surgery. I would like to get back on that path. Again thanks for the responses.
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- May 6, 2013 at 4:42 pm
Cancer, especially melanoma, is so very unfair and I’m sorry you and your wife are going through this. It sounds like you are in good hands and making the best choices you can. I know that feeling of disbelief you have and how frightening everything is. You are not alone. Hang in there.Amy
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- May 6, 2013 at 4:42 pm
Cancer, especially melanoma, is so very unfair and I’m sorry you and your wife are going through this. It sounds like you are in good hands and making the best choices you can. I know that feeling of disbelief you have and how frightening everything is. You are not alone. Hang in there.Amy
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- May 6, 2013 at 4:42 pm
Cancer, especially melanoma, is so very unfair and I’m sorry you and your wife are going through this. It sounds like you are in good hands and making the best choices you can. I know that feeling of disbelief you have and how frightening everything is. You are not alone. Hang in there.Amy
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- May 7, 2013 at 1:11 am
I'm very sorry for you both. It sounds like you are doing everything right. I have no advice, but can empathize. My husband has new nodules popping up every day and I wish so badly something could stop this. It truly is a nighmare.
Sending you good thoughts and prayers.
Lisa
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- May 7, 2013 at 1:11 am
I'm very sorry for you both. It sounds like you are doing everything right. I have no advice, but can empathize. My husband has new nodules popping up every day and I wish so badly something could stop this. It truly is a nighmare.
Sending you good thoughts and prayers.
Lisa
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- May 7, 2013 at 1:11 am
I'm very sorry for you both. It sounds like you are doing everything right. I have no advice, but can empathize. My husband has new nodules popping up every day and I wish so badly something could stop this. It truly is a nighmare.
Sending you good thoughts and prayers.
Lisa
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