mms7angels1

Dear Celeste,

Thank you for sharing all that you have experienced thru melasuckanoma and more. I was diagnosed in 2008, stage 4 in 2013, lungs, brain, bones….I am NED since end of Nivo treatment in Dec 2016. Had my every 3-4 month brain MRI today and CTs in early Nov.

Been following you since 2013 and reading your blog, I have learned so much, mostly to appreciate you and others who are in the fight and all of the warriors and our families, caregivers, etc. Stay the course, you will get better and better, you have more to receive and enjoy in this life. Blessings to you and yours

Maureen from Maryland

Hello

Good news on the pet/ct. I've had several mets over the years. Last year found a met in the brain in late July, started Nivo in early August, several days later had brain met SBRT, doing well. Been on Nivo now for 6+ months and have had 2 follow up brain mris and 2 CTs and no new lesions. Take a deep breath, start treatment and go from there. 

Prayers and blessings sent your way

Maureen

Hello

Good news on the pet/ct. I've had several mets over the years. Last year found a met in the brain in late July, started Nivo in early August, several days later had brain met SBRT, doing well. Been on Nivo now for 6+ months and have had 2 follow up brain mris and 2 CTs and no new lesions. Take a deep breath, start treatment and go from there. 

Prayers and blessings sent your way

Maureen

Hello

Good news on the pet/ct. I've had several mets over the years. Last year found a met in the brain in late July, started Nivo in early August, several days later had brain met SBRT, doing well. Been on Nivo now for 6+ months and have had 2 follow up brain mris and 2 CTs and no new lesions. Take a deep breath, start treatment and go from there. 

Prayers and blessings sent your way

Maureen

Hi there

I had a bone met in my left humerus that I too thought was muscular. It hurt when I carried anything of weight extended from my left side. I ended up falling and breaking the bone. Had to have a titanium rod implanted and then radiation to the met. Maybe talk to your doctor, when I had the arm xray, the orthopedist could tell that the fracture was due to an underlying condition. Hope that helps. 

Maureen

Hi there

I had a bone met in my left humerus that I too thought was muscular. It hurt when I carried anything of weight extended from my left side. I ended up falling and breaking the bone. Had to have a titanium rod implanted and then radiation to the met. Maybe talk to your doctor, when I had the arm xray, the orthopedist could tell that the fracture was due to an underlying condition. Hope that helps. 

Maureen

Hi there

I had a bone met in my left humerus that I too thought was muscular. It hurt when I carried anything of weight extended from my left side. I ended up falling and breaking the bone. Had to have a titanium rod implanted and then radiation to the met. Maybe talk to your doctor, when I had the arm xray, the orthopedist could tell that the fracture was due to an underlying condition. Hope that helps. 

Maureen

Hi Jenny

I did high dose interferon in May 2008, 5 weekdays x 4weeks in a drs. treatment area. This was the only approved protocol at that time and I was seeing a local oncologist in MD.

I would recommend you have someone drive you there and back. They premedicated me with anti nausea drugs and antihistamines, ibuprofen and  gave extra fluids (normal saline) in advance of the interferon. I was sleepy from the antihistamine during treatment. I had chills and night sweats and some mild to moderate headaches during the month of treatment. I experienced varying levels of fatigue, drank a lot of gatorade and ate smaller blander meals. The weekends between treatments I felt good enough to do light errands and attend family functions. I experienced mood swings and lots of anxiety and started Lexapro in October of 2008 and continue to take it. 

I was on short term disability while undergoing the IV treatment. I then did 3 months of subq self administration but stopped that once I began seeing Dr. William Sharfman at Hopkins. Dr. Sharfman wasn't an advocate of interferon much less the subq treatments. I remained NED for almost 5 years. 

Hope that helps and I send my prayers for a manageable experience and quick return to everyday living and joy of life!

Maureen

Hi Jenny

I did high dose interferon in May 2008, 5 weekdays x 4weeks in a drs. treatment area. This was the only approved protocol at that time and I was seeing a local oncologist in MD.

I would recommend you have someone drive you there and back. They premedicated me with anti nausea drugs and antihistamines, ibuprofen and  gave extra fluids (normal saline) in advance of the interferon. I was sleepy from the antihistamine during treatment. I had chills and night sweats and some mild to moderate headaches during the month of treatment. I experienced varying levels of fatigue, drank a lot of gatorade and ate smaller blander meals. The weekends between treatments I felt good enough to do light errands and attend family functions. I experienced mood swings and lots of anxiety and started Lexapro in October of 2008 and continue to take it. 

I was on short term disability while undergoing the IV treatment. I then did 3 months of subq self administration but stopped that once I began seeing Dr. William Sharfman at Hopkins. Dr. Sharfman wasn't an advocate of interferon much less the subq treatments. I remained NED for almost 5 years. 

Hope that helps and I send my prayers for a manageable experience and quick return to everyday living and joy of life!

Maureen

Hi Jenny

I did high dose interferon in May 2008, 5 weekdays x 4weeks in a drs. treatment area. This was the only approved protocol at that time and I was seeing a local oncologist in MD.

I would recommend you have someone drive you there and back. They premedicated me with anti nausea drugs and antihistamines, ibuprofen and  gave extra fluids (normal saline) in advance of the interferon. I was sleepy from the antihistamine during treatment. I had chills and night sweats and some mild to moderate headaches during the month of treatment. I experienced varying levels of fatigue, drank a lot of gatorade and ate smaller blander meals. The weekends between treatments I felt good enough to do light errands and attend family functions. I experienced mood swings and lots of anxiety and started Lexapro in October of 2008 and continue to take it. 

I was on short term disability while undergoing the IV treatment. I then did 3 months of subq self administration but stopped that once I began seeing Dr. William Sharfman at Hopkins. Dr. Sharfman wasn't an advocate of interferon much less the subq treatments. I remained NED for almost 5 years. 

Hope that helps and I send my prayers for a manageable experience and quick return to everyday living and joy of life!

Maureen

Hi Mary

You go girl, awesome woman you are. I'm 57, in last 8 years have also had INF, IL-2, radiation to lungs, arm, brain and the last 6 months on Nivo. My arthritis in my AC joints, hands, feet, knees is worse in the last 6 months. It shows on scans, mris, and pain relievers don't help. I try to walk a couple of miles every day, take epsom salt baths and pay attention to the shoes I wear as I need support for the mid-sole in addition my high arches. Started Osteo Bi-flex (glucosamin and chondroitin) supplements to see if that may help. BTW, Dr. Weber is a great guy. I've been under the care of Dr. Sharfman at JHU and he's been so great to me and for me.  

I wish you all the best Mary, keep on living!

Maureen

Hi Mary

You go girl, awesome woman you are. I'm 57, in last 8 years have also had INF, IL-2, radiation to lungs, arm, brain and the last 6 months on Nivo. My arthritis in my AC joints, hands, feet, knees is worse in the last 6 months. It shows on scans, mris, and pain relievers don't help. I try to walk a couple of miles every day, take epsom salt baths and pay attention to the shoes I wear as I need support for the mid-sole in addition my high arches. Started Osteo Bi-flex (glucosamin and chondroitin) supplements to see if that may help. BTW, Dr. Weber is a great guy. I've been under the care of Dr. Sharfman at JHU and he's been so great to me and for me.  

I wish you all the best Mary, keep on living!

Maureen

Hi Mary

You go girl, awesome woman you are. I'm 57, in last 8 years have also had INF, IL-2, radiation to lungs, arm, brain and the last 6 months on Nivo. My arthritis in my AC joints, hands, feet, knees is worse in the last 6 months. It shows on scans, mris, and pain relievers don't help. I try to walk a couple of miles every day, take epsom salt baths and pay attention to the shoes I wear as I need support for the mid-sole in addition my high arches. Started Osteo Bi-flex (glucosamin and chondroitin) supplements to see if that may help. BTW, Dr. Weber is a great guy. I've been under the care of Dr. Sharfman at JHU and he's been so great to me and for me.  

I wish you all the best Mary, keep on living!

Maureen

Thanks Artie! I read some of your postings last week and made a note of the xgeva. Go for my initial radiology simulation/set-up tomorrow and will ask my radiation oncologist. 

Really appreciate the info.

Agree we keep fighting for our future, we're worth it!

Best

Maureen

Thanks Artie! I read some of your postings last week and made a note of the xgeva. Go for my initial radiology simulation/set-up tomorrow and will ask my radiation oncologist. 

Really appreciate the info.

Agree we keep fighting for our future, we're worth it!

Best

Maureen