robyn44

I have been on Zelorf since December. Watch the rash! While it is a common side effect it can turn into Steven Johnson syndrome which can be fatal. I went to bed on the 31st with a minor rash, no itching. by the evening Jan.1 the rash was severe. I had a temp. of 106. ER- given steroids, lab work. Liver functions were very high so remained on steroids for 1 week. Removed from Z for 3 weeks untill Liver Function numbers were in normal range. I am on 1/2 dose now. It is working. Just found out NED. I have had sig. brain mets and lung met. My MDA told me that they " as physicans" are not stressing the sig. of the rash and fever to patients.  Be sure to contact your Dr. so they can monitor the rash. As my rash resolved my skin did peel some. As someone else reminded, be sure to stay covered up. I took my shoes off for less than 10 min. and ended up with a blistering burn that scared. It was crazy, my feet were in the shade at the time as well.  My joints, peridoically hurt. The pain is minor to at times sig. The pain travels around. Feet are always sore though. My hair did thin after 3 weeks but has stopped and am having "regrowth".  Hang in there and hope things go ok for you. Take CareRobyn

I have been on Zelorf since December. Watch the rash! While it is a common side effect it can turn into Steven Johnson syndrome which can be fatal. I went to bed on the 31st with a minor rash, no itching. by the evening Jan.1 the rash was severe. I had a temp. of 106. ER- given steroids, lab work. Liver functions were very high so remained on steroids for 1 week. Removed from Z for 3 weeks untill Liver Function numbers were in normal range. I am on 1/2 dose now. It is working. Just found out NED. I have had sig. brain mets and lung met. My MDA told me that they " as physicans" are not stressing the sig. of the rash and fever to patients.  Be sure to contact your Dr. so they can monitor the rash. As my rash resolved my skin did peel some. As someone else reminded, be sure to stay covered up. I took my shoes off for less than 10 min. and ended up with a blistering burn that scared. It was crazy, my feet were in the shade at the time as well.  My joints, peridoically hurt. The pain is minor to at times sig. The pain travels around. Feet are always sore though. My hair did thin after 3 weeks but has stopped and am having "regrowth".  Hang in there and hope things go ok for you. Take CareRobyn

I have been on Zelorf since December. Watch the rash! While it is a common side effect it can turn into Steven Johnson syndrome which can be fatal. I went to bed on the 31st with a minor rash, no itching. by the evening Jan.1 the rash was severe. I had a temp. of 106. ER- given steroids, lab work. Liver functions were very high so remained on steroids for 1 week. Removed from Z for 3 weeks untill Liver Function numbers were in normal range. I am on 1/2 dose now. It is working. Just found out NED. I have had sig. brain mets and lung met. My MDA told me that they " as physicans" are not stressing the sig. of the rash and fever to patients.  Be sure to contact your Dr. so they can monitor the rash. As my rash resolved my skin did peel some. As someone else reminded, be sure to stay covered up. I took my shoes off for less than 10 min. and ended up with a blistering burn that scared. It was crazy, my feet were in the shade at the time as well.  My joints, peridoically hurt. The pain is minor to at times sig. The pain travels around. Feet are always sore though. My hair did thin after 3 weeks but has stopped and am having "regrowth".  Hang in there and hope things go ok for you. Take CareRobyn

Linda

DANG IT!  You responded so well the last time to SRS, no reason to think you wont this time either! Thinking about you!

Robyn

Linda

DANG IT!  You responded so well the last time to SRS, no reason to think you wont this time either! Thinking about you!

Robyn

Linda

DANG IT!  You responded so well the last time to SRS, no reason to think you wont this time either! Thinking about you!

Robyn

I also stay at rotary house. Just convient and I usually go alone unless having surgey. I will post the number for town car. His name is Norris and he has been wonerful. I have used his car service for so long. He says he is my Houston brother! Aflaac is a great resourse. I was denied the ccancer program due to having had in situ just prior to trying to sin up! They are generous with their travel and treatment benefits! Hope for great things for your Wayne as well. Never thought I would hear those words. Enjoying it while it lasts and hoping for long term!  Robyn

I also stay at rotary house. Just convient and I usually go alone unless having surgey. I will post the number for town car. His name is Norris and he has been wonerful. I have used his car service for so long. He says he is my Houston brother! Aflaac is a great resourse. I was denied the ccancer program due to having had in situ just prior to trying to sin up! They are generous with their travel and treatment benefits! Hope for great things for your Wayne as well. Never thought I would hear those words. Enjoying it while it lasts and hoping for long term!  Robyn

I also stay at rotary house. Just convient and I usually go alone unless having surgey. I will post the number for town car. His name is Norris and he has been wonerful. I have used his car service for so long. He says he is my Houston brother! Aflaac is a great resourse. I was denied the ccancer program due to having had in situ just prior to trying to sin up! They are generous with their travel and treatment benefits! Hope for great things for your Wayne as well. Never thought I would hear those words. Enjoying it while it lasts and hoping for long term!  Robyn

I go to MDA every 4- 6 weeks. Fly Southwest, cabs, hotels ect. I have had to stay for up to 3 weeks. It does get expensive but my team there has saved my life! I take a town car from and back to airport. It is only 30.00 each way. Stay in a hotel that has kitchenette and shuttle service. The shuttle will take you to grocery store and to MDA. It helps. Found out on Friday that I am, for the first time in over 3yrs NED. Brain and lung mets. Team was so excited.Neurosurgeon could not stop smiling and called my original surgeon in boston to let him know. I have had 6 crani's, 3 gamma knife, thoracotomy and multiple chemo and radiation. I have heard that the Social Workers will help you locate resources to help absorb some of the costs if needed.  I go as often as they tell me they need to see me. I do have local "eyes"but MDA  "is the ship captain" as my mel oncologist at MDA states.

I know it can be trying but for me has been well worth it. I hope you have the same experience-

Robyn

I go to MDA every 4- 6 weeks. Fly Southwest, cabs, hotels ect. I have had to stay for up to 3 weeks. It does get expensive but my team there has saved my life! I take a town car from and back to airport. It is only 30.00 each way. Stay in a hotel that has kitchenette and shuttle service. The shuttle will take you to grocery store and to MDA. It helps. Found out on Friday that I am, for the first time in over 3yrs NED. Brain and lung mets. Team was so excited.Neurosurgeon could not stop smiling and called my original surgeon in boston to let him know. I have had 6 crani's, 3 gamma knife, thoracotomy and multiple chemo and radiation. I have heard that the Social Workers will help you locate resources to help absorb some of the costs if needed.  I go as often as they tell me they need to see me. I do have local "eyes"but MDA  "is the ship captain" as my mel oncologist at MDA states.

I know it can be trying but for me has been well worth it. I hope you have the same experience-

Robyn

I go to MDA every 4- 6 weeks. Fly Southwest, cabs, hotels ect. I have had to stay for up to 3 weeks. It does get expensive but my team there has saved my life! I take a town car from and back to airport. It is only 30.00 each way. Stay in a hotel that has kitchenette and shuttle service. The shuttle will take you to grocery store and to MDA. It helps. Found out on Friday that I am, for the first time in over 3yrs NED. Brain and lung mets. Team was so excited.Neurosurgeon could not stop smiling and called my original surgeon in boston to let him know. I have had 6 crani's, 3 gamma knife, thoracotomy and multiple chemo and radiation. I have heard that the Social Workers will help you locate resources to help absorb some of the costs if needed.  I go as often as they tell me they need to see me. I do have local "eyes"but MDA  "is the ship captain" as my mel oncologist at MDA states.

I know it can be trying but for me has been well worth it. I hope you have the same experience-

Robyn

Lisa- I have had 6 crani's. The recovery has been differnt for each one. I have been out of hospital within 48 hours each time. I have been able to walk within 24 hours without any problems. I go to MDA in Houston. I have 2 young children and run a psych.treatment center for children so work a lot of hours. I am back to work within 2 weeks. Taking care of the kids right away is difficult. You will be given instructions not to lift anything or carry anything heavier than 5 lbs. You can not bend over either. The steroids are awful but they taper you off quickly. I had to remain on steroids for 9 months for the first year due to edema. I have not been able to get off of the anti seizure meds due to ongoing issues with  partial seizures. I have mri at MDA on Wed. and see neurosurgeon on thurs. If all is good hope to get off Keppra soon. You will probably tire easily but I have found that if I stay active, rest when needed and follow dr. instructions I recover very quickly. I have my staples/sutures removed by sister (nurse). It is not  very painful and sounds worse than it is. Ihad a thoracotomy which was 100 times worse! Take pj's that button in the front so you wont have to put anything over your head. Just easier. Good luck and will keep you in my thoughts!

Robyn

Lisa- I have had 6 crani's. The recovery has been differnt for each one. I have been out of hospital within 48 hours each time. I have been able to walk within 24 hours without any problems. I go to MDA in Houston. I have 2 young children and run a psych.treatment center for children so work a lot of hours. I am back to work within 2 weeks. Taking care of the kids right away is difficult. You will be given instructions not to lift anything or carry anything heavier than 5 lbs. You can not bend over either. The steroids are awful but they taper you off quickly. I had to remain on steroids for 9 months for the first year due to edema. I have not been able to get off of the anti seizure meds due to ongoing issues with  partial seizures. I have mri at MDA on Wed. and see neurosurgeon on thurs. If all is good hope to get off Keppra soon. You will probably tire easily but I have found that if I stay active, rest when needed and follow dr. instructions I recover very quickly. I have my staples/sutures removed by sister (nurse). It is not  very painful and sounds worse than it is. Ihad a thoracotomy which was 100 times worse! Take pj's that button in the front so you wont have to put anything over your head. Just easier. Good luck and will keep you in my thoughts!

Robyn

Lisa- I have had 6 crani's. The recovery has been differnt for each one. I have been out of hospital within 48 hours each time. I have been able to walk within 24 hours without any problems. I go to MDA in Houston. I have 2 young children and run a psych.treatment center for children so work a lot of hours. I am back to work within 2 weeks. Taking care of the kids right away is difficult. You will be given instructions not to lift anything or carry anything heavier than 5 lbs. You can not bend over either. The steroids are awful but they taper you off quickly. I had to remain on steroids for 9 months for the first year due to edema. I have not been able to get off of the anti seizure meds due to ongoing issues with  partial seizures. I have mri at MDA on Wed. and see neurosurgeon on thurs. If all is good hope to get off Keppra soon. You will probably tire easily but I have found that if I stay active, rest when needed and follow dr. instructions I recover very quickly. I have my staples/sutures removed by sister (nurse). It is not  very painful and sounds worse than it is. Ihad a thoracotomy which was 100 times worse! Take pj's that button in the front so you wont have to put anything over your head. Just easier. Good luck and will keep you in my thoughts!

Robyn