Dis Breast Cancer Survivors Part IV - GAGWTA

[CaleCakes]

I feel like a tool for making such a big deal about the cough which has all but subsided at this point. I think you all were right and it was from allergies. I can cross that off my symptom list. The stomach pains and leg fatigue have also subsided since decreasing the premed steroid. I know there are so many people out there fighting their own battle struggling with their own symptoms. I am grateful I haven't had it all that bad.

I have has 2 visits now with the new practice. The first was super overwhelming as the office was so busy. There were so many people in the waiting room the receptionist had to ask people to step outside as they were over capacity. The doctor was nice, we chatted some about the rest of my treatments and I asked her not to change anything in the regiment since I was finally feeling OK with the premeds and such. She agreed to hold the other meds they typically give there ( such as a nausea med, another steroid, something else I can't remember). She gave me a tour of the infusion room which was very busy during that initial visit but then when I went for treatment this week it wasn't as crazy. The office has been quick to update my portal with labs and the one time i called the office they called back right away. They do things a little different in that they take blood from my arm not the port as to not access it if my labs aren't good which makes sense. So far I am feeling good about the decision to change practices. 5 more treatments to go!

I heard a rumor that some oncologist like patients to keep the port for up to 5 years into remission. This can't be true! I am hoping this thing comes out in July.

 

[Grace&Carolinesmom]

I feel like a tool for making such a big deal about the cough which has all but subsided at this point. I think you all were right and it was from allergies. I can cross that off my symptom list. The stomach pains and leg fatigue have also subsided since decreasing the premed steroid. I know there are so many people out there fighting their own battle struggling with their own symptoms. I am grateful I haven't had it all that bad.

I have has 2 visits now with the new practice. The first was super overwhelming as the office was so busy. There were so many people in the waiting room the receptionist had to ask people to step outside as they were over capacity. The doctor was nice, we chatted some about the rest of my treatments and I asked her not to change anything in the regiment since I was finally feeling OK with the premeds and such. She agreed to hold the other meds they typically give there ( such as a nausea med, another steroid, something else I can't remember). She gave me a tour of the infusion room which was very busy during that initial visit but then when I went for treatment this week it wasn't as crazy. The office has been quick to update my portal with labs and the one time i called the office they called back right away. They do things a little different in that they take blood from my arm not the port as to not access it if my labs aren't good which makes sense. So far I am feeling good about the decision to change practices. 5 more treatments to go!

I heard a rumor that some oncologist like patients to keep the port for up to 5 years into remission. This can't be true! I am hoping this thing comes out in July.

Glad to hear things are going well with the new practice. A busy office is a good sign of a good practice.

I had my port taken out before starting radiation. So happy it is out. Hopefully you can have yours removed in July!

 

[Grace&Carolinesmom]

I quick update on my progress. I have 3 more radiation treatments and I am DONE!!! Radiation hasn't been too bad. I find that I get really tired after 4 treatments in a row so I take naps on Thursdays, Fridays, and sometimes Saturdays too. I have developed a radiation induced dermatitis. I am putting a prescription hydrocortisone cream on it but it is so hard sometimes to NOT scratch. It itches so much!

My next mammogram is on June 20 and then I see the breast cancer doctor on June 22 to go over the results. If all is well, I don't see my oncologist again until Sept 1.

 

[mommasita]

Hello everyone, I am sorry to possibly, and more than likely be in the wrong spot. Is there anywhere for a newcomer.. or an uncertain terrified one. Thank you ladies, and prayers for you all

 

[3threebabies]

Hello everyone, I am sorry to possibly, and more than likely be in the wrong spot. Is there anywhere for a newcomer.. or an uncertain terrified one. Thank you ladies, and prayers for you all

Mommasita,
We welcome you with open arms, but we are sorry you find your way to our thread. Both @Grace&Carolinesmom and @CaleCakes are still in active treatment and posted with updates today. We are here for whatever support and advice we can offer.

 

[Pea-n-Me]

Hello everyone, I am sorry to possibly, and more than likely be in the wrong spot. Is there anywhere for a newcomer.. or an uncertain terrified one. Thank you ladies, and prayers for you all

That’s why this thread was started! What’s going on, if you care to share?

 

[Pea-n-Me]

Glad to hear good updates here!

 

[GeekzRus]

Thank you for the link to this thread @Pea-n-Me
A little bit about us Myself I am a cervical cancer survivor but feel like I complained too much looking back at it now. With #WarriorWalt cancer which he has endured so well. Here is his story (yes it is a read) And most recent news he had a dream trip to WDW which I could tell brought some Magic <3

Warrior Walt was diagnosed with Stage 4 High-Risk Neuroblastoma Cancer with the NMYC gene on July 25th, 2019. He was transferred twice before he came to Children’s Hospital of Wisconsin, where we were so grateful to have the doctors and staff who have helped him so much. He is one tough warrior which is how he got his nickname Warrior Walt. In the long run, his treatment plan was to be 12-18 which we were here the entire time as we live 5 hours away from our Indian Reservation. So we are also so grateful to the Ronald McDonald House of Charities of Eastern Wisconsin for making it possible to make sure he got the treatment he deserves, he would not have made it this far without it. He was given a 3% chance of a 5-year survival rate.. He has had multiple rounds of chemo, a resection surgery, 2 stem cell transplants, immunotherapy, standard relapse protocol, ICE Chemo, full cranial spinal radiation. He is high risk and has been through so much but takes on each new battle like the warrior he is. On May 29th 2020 they had declared him NED ( no evidence of disease however they did not do an MRI to rule out any CNS cancer from Neuroblastoma. He went in for one round of immunotherapy which was to last 6 months. Upon going in for his second round of immunotherapy(three weeks after being told he was NED) the night before his balance seemed a tad off. So when we went for admission mentioned it to the doctors. They did a CT of the head that came back normal but they wanted to be sure so ordered a body MRI the next day pushing off his immunotherapy. Later that day they walked in with the big dogs and could tell it was not good news. Informed us that the MRI showed a tumor in his spine up to the lower part of the back of the brain which was in the CNS. He went through Chemo and antibodies and it did progress so they looked into clinical trials and Neuroblastoma specialists as we know he is a true Warrior and the force is with him always. We do know this means that travel to a different state was most likely. In September we found out and agreed the best option will be North Carolina with Dr. Sholler as they have more treatment options. so the second week in September he was transferred. His treatment seemed to be helping, but upon his MRI in November 2020 we found out that cancer had spread. So the treatment team with Dr. Sholler and the rare and solid tumor program will not give up on him. So immediately they came up with a plan. He started ICE Chemo a few days before his 2nd birthday, regardless he still had a great birthday. So he Went inpatient and received cranial spinal radiation that lasted until Christmas Eve of 2020. He had scans on January 28th, 2021, and on February 2nd he was transferred to NY for what we thought was about 10 weeks to get the 8h9 antibody which is a clinical trial.. Following his second round of ICE Chemo and Stem Cell Rescue. We had been out there for two cycles of the 8h9 clinical trial when he had a brain bleed and while having surgery he suffered a stroke and when he was discharged from Memorial Sloan Ketteringr to help him regain function and mobility due to the stroke. At that time came up with the best plan for him with multiple teams he would need and a good Neuroblastoma program at Seattle Children's which he has started with Immunotherapy and will go from there. Each day he gets a little better and walks and runs now and counts have never been so good! He plays like a normal kid. The doctors are so happy, they state every time something happens Warrior Walt has always surprised them

 

[3threebabies]

Thank you for the link to this thread @Pea-n-Me
A little bit about us Myself I am a cervical cancer survivor but feel like I complained too much looking back at it now. With #WarriorWalt cancer which he has endured so well. Here is his story (yes it is a read) And most recent news he had a dream trip to WDW which I could tell brought some Magic <3

Warrior Walt was diagnosed with Stage 4 High-Risk Neuroblastoma Cancer with the NMYC gene on July 25th, 2019. He was transferred twice before he came to Children’s Hospital of Wisconsin, where we were so grateful to have the doctors and staff who have helped him so much. He is one tough warrior which is how he got his nickname Warrior Walt. In the long run, his treatment plan was to be 12-18 which we were here the entire time as we live 5 hours away from our Indian Reservation. So we are also so grateful to the Ronald McDonald House of Charities of Eastern Wisconsin for making it possible to make sure he got the treatment he deserves, he would not have made it this far without it. He was given a 3% chance of a 5-year survival rate.. He has had multiple rounds of chemo, a resection surgery, 2 stem cell transplants, immunotherapy, standard relapse protocol, ICE Chemo, full cranial spinal radiation. He is high risk and has been through so much but takes on each new battle like the warrior he is. On May 29th 2020 they had declared him NED ( no evidence of disease however they did not do an MRI to rule out any CNS cancer from Neuroblastoma. He went in for one round of immunotherapy which was to last 6 months. Upon going in for his second round of immunotherapy(three weeks after being told he was NED) the night before his balance seemed a tad off. So when we went for admission mentioned it to the doctors. They did a CT of the head that came back normal but they wanted to be sure so ordered a body MRI the next day pushing off his immunotherapy. Later that day they walked in with the big dogs and could tell it was not good news. Informed us that the MRI showed a tumor in his spine up to the lower part of the back of the brain which was in the CNS. He went through Chemo and antibodies and it did progress so they looked into clinical trials and Neuroblastoma specialists as we know he is a true Warrior and the force is with him always. We do know this means that travel to a different state was most likely. In September we found out and agreed the best option will be North Carolina with Dr. Sholler as they have more treatment options. so the second week in September he was transferred. His treatment seemed to be helping, but upon his MRI in November 2020 we found out that cancer had spread. So the treatment team with Dr. Sholler and the rare and solid tumor program will not give up on him. So immediately they came up with a plan. He started ICE Chemo a few days before his 2nd birthday, regardless he still had a great birthday. So he Went inpatient and received cranial spinal radiation that lasted until Christmas Eve of 2020. He had scans on January 28th, 2021, and on February 2nd he was transferred to NY for what we thought was about 10 weeks to get the 8h9 antibody which is a clinical trial.. Following his second round of ICE Chemo and Stem Cell Rescue. We had been out there for two cycles of the 8h9 clinical trial when he had a brain bleed and while having surgery he suffered a stroke and when he was discharged from Memorial Sloan Ketteringr to help him regain function and mobility due to the stroke. At that time came up with the best plan for him with multiple teams he would need and a good Neuroblastoma program at Seattle Children's which he has started with Immunotherapy and will go from there. Each day he gets a little better and walks and runs now and counts have never been so good! He plays like a normal kid. The doctors are so happy, they state every time something happens Warrior Walt has always surprised them

Thank you for sharing with us about your little guy. I think you both are warriors.

 

[CaleCakes]

Thank you for the link to this thread @Pea-n-Me
A little bit about us Myself I am a cervical cancer survivor but feel like I complained too much looking back at it now. With #WarriorWalt cancer which he has endured so well. Here is his story (yes it is a read) And most recent news he had a dream trip to WDW which I could tell brought some Magic <3

Warrior Walt was diagnosed with Stage 4 High-Risk Neuroblastoma Cancer with the NMYC gene on July 25th, 2019. He was transferred twice before he came to Children’s Hospital of Wisconsin, where we were so grateful to have the doctors and staff who have helped him so much. He is one tough warrior which is how he got his nickname Warrior Walt. In the long run, his treatment plan was to be 12-18 which we were here the entire time as we live 5 hours away from our Indian Reservation. So we are also so grateful to the Ronald McDonald House of Charities of Eastern Wisconsin for making it possible to make sure he got the treatment he deserves, he would not have made it this far without it. He was given a 3% chance of a 5-year survival rate.. He has had multiple rounds of chemo, a resection surgery, 2 stem cell transplants, immunotherapy, standard relapse protocol, ICE Chemo, full cranial spinal radiation. He is high risk and has been through so much but takes on each new battle like the warrior he is. On May 29th 2020 they had declared him NED ( no evidence of disease however they did not do an MRI to rule out any CNS cancer from Neuroblastoma. He went in for one round of immunotherapy which was to last 6 months. Upon going in for his second round of immunotherapy(three weeks after being told he was NED) the night before his balance seemed a tad off. So when we went for admission mentioned it to the doctors. They did a CT of the head that came back normal but they wanted to be sure so ordered a body MRI the next day pushing off his immunotherapy. Later that day they walked in with the big dogs and could tell it was not good news. Informed us that the MRI showed a tumor in his spine up to the lower part of the back of the brain which was in the CNS. He went through Chemo and antibodies and it did progress so they looked into clinical trials and Neuroblastoma specialists as we know he is a true Warrior and the force is with him always. We do know this means that travel to a different state was most likely. In September we found out and agreed the best option will be North Carolina with Dr. Sholler as they have more treatment options. so the second week in September he was transferred. His treatment seemed to be helping, but upon his MRI in November 2020 we found out that cancer had spread. So the treatment team with Dr. Sholler and the rare and solid tumor program will not give up on him. So immediately they came up with a plan. He started ICE Chemo a few days before his 2nd birthday, regardless he still had a great birthday. So he Went inpatient and received cranial spinal radiation that lasted until Christmas Eve of 2020. He had scans on January 28th, 2021, and on February 2nd he was transferred to NY for what we thought was about 10 weeks to get the 8h9 antibody which is a clinical trial.. Following his second round of ICE Chemo and Stem Cell Rescue. We had been out there for two cycles of the 8h9 clinical trial when he had a brain bleed and while having surgery he suffered a stroke and when he was discharged from Memorial Sloan Ketteringr to help him regain function and mobility due to the stroke. At that time came up with the best plan for him with multiple teams he would need and a good Neuroblastoma program at Seattle Children's which he has started with Immunotherapy and will go from there. Each day he gets a little better and walks and runs now and counts have never been so good! He plays like a normal kid. The doctors are so happy, they state every time something happens Warrior Walt has always surprised them

Thank you for sharing your story. You and your son are so strong. When I started my journey I got through the initial shock, fear of surgeries, and fear of treatment by thinking of all the little kids that are fighting their own battles and how strong they are.

 

[Pea-n-Me]

Thank you for the link to this thread @Pea-n-Me
A little bit about us Myself I am a cervical cancer survivor but feel like I complained too much looking back at it now. With #WarriorWalt cancer which he has endured so well. Here is his story (yes it is a read) And most recent news he had a dream trip to WDW which I could tell brought some Magic <3

Warrior Walt was diagnosed with Stage 4 High-Risk Neuroblastoma Cancer with the NMYC gene on July 25th, 2019. He was transferred twice before he came to Children’s Hospital of Wisconsin, where we were so grateful to have the doctors and staff who have helped him so much. He is one tough warrior which is how he got his nickname Warrior Walt. In the long run, his treatment plan was to be 12-18 which we were here the entire time as we live 5 hours away from our Indian Reservation. So we are also so grateful to the Ronald McDonald House of Charities of Eastern Wisconsin for making it possible to make sure he got the treatment he deserves, he would not have made it this far without it. He was given a 3% chance of a 5-year survival rate.. He has had multiple rounds of chemo, a resection surgery, 2 stem cell transplants, immunotherapy, standard relapse protocol, ICE Chemo, full cranial spinal radiation. He is high risk and has been through so much but takes on each new battle like the warrior he is. On May 29th 2020 they had declared him NED ( no evidence of disease however they did not do an MRI to rule out any CNS cancer from Neuroblastoma. He went in for one round of immunotherapy which was to last 6 months. Upon going in for his second round of immunotherapy(three weeks after being told he was NED) the night before his balance seemed a tad off. So when we went for admission mentioned it to the doctors. They did a CT of the head that came back normal but they wanted to be sure so ordered a body MRI the next day pushing off his immunotherapy. Later that day they walked in with the big dogs and could tell it was not good news. Informed us that the MRI showed a tumor in his spine up to the lower part of the back of the brain which was in the CNS. He went through Chemo and antibodies and it did progress so they looked into clinical trials and Neuroblastoma specialists as we know he is a true Warrior and the force is with him always. We do know this means that travel to a different state was most likely. In September we found out and agreed the best option will be North Carolina with Dr. Sholler as they have more treatment options. so the second week in September he was transferred. His treatment seemed to be helping, but upon his MRI in November 2020 we found out that cancer had spread. So the treatment team with Dr. Sholler and the rare and solid tumor program will not give up on him. So immediately they came up with a plan. He started ICE Chemo a few days before his 2nd birthday, regardless he still had a great birthday. So he Went inpatient and received cranial spinal radiation that lasted until Christmas Eve of 2020. He had scans on January 28th, 2021, and on February 2nd he was transferred to NY for what we thought was about 10 weeks to get the 8h9 antibody which is a clinical trial.. Following his second round of ICE Chemo and Stem Cell Rescue. We had been out there for two cycles of the 8h9 clinical trial when he had a brain bleed and while having surgery he suffered a stroke and when he was discharged from Memorial Sloan Ketteringr to help him regain function and mobility due to the stroke. At that time came up with the best plan for him with multiple teams he would need and a good Neuroblastoma program at Seattle Children's which he has started with Immunotherapy and will go from there. Each day he gets a little better and walks and runs now and counts have never been so good! He plays like a normal kid. The doctors are so happy, they state every time something happens Warrior Walt has always surprised them

I’m glad you found your way over, and thank you for sharing your stories. I agree, you are both warriors!

I, too, had a couple of things happen shortly after my own cancer diagnosis that involved kids, and helped me feel different about my diagnosis. First one, I was ten days out after diagnosis, when we went on our first Disney cruise. I thought about canceling, as my mind was sort of not in a good place, but a) we were going with friends and their kids and I didn’t want to spoil it for them, and b) our kids were turning 6 on the ship and they were really looking forward to it, so we went anyway. It was bittersweet, though, and sometimes I’d find myself a little teary when all those inevitable fears cropped up. Till one day I was having breakfast out on the Aft seating area when behind us, there was a child there from Make A Wish. And I realized that I was so grateful that it was me who was fighting the battle and not one of my kids. That helped me keep it all in perspective. I remember another time, after that, when I went to Dana Farber Cancer Institute one day for a wig fitting. It was Christmas season, and there was a volunteer choir singing holiday songs in the lobby. The music was beautiful. I was in the elevator with a little boy who was obviously going through cancer treatment, as he was bald, and as a nurse, I recognized he was unwell. I had all I could do not to start bawling in the elevator. I did manage to hold it in until I got outside. But those memories stayed with me. I think I also mentioned to you before that I worked for several years at our own Children’s Hospital here in Boston, so there are lots of things that have stayed with me from that, too. Eventually I came to see myself as very fortunate in a lot of ways, to have survived this thing, to be able to continue to be here for my own children, and to be able to offer support to others going through it if I can. It really is life changing when you think about it.

Glad your little warrior is hanging in so toughly. Keeping you both in my prayers.

 

[ZellyB]

Thank you for the link to this thread @Pea-n-Me
A little bit about us Myself I am a cervical cancer survivor but feel like I complained too much looking back at it now. With #WarriorWalt cancer which he has endured so well. Here is his story (yes it is a read) And most recent news he had a dream trip to WDW which I could tell brought some Magic <3

Warrior Walt was diagnosed with Stage 4 High-Risk Neuroblastoma Cancer with the NMYC gene on July 25th, 2019. He was transferred twice before he came to Children’s Hospital of Wisconsin, where we were so grateful to have the doctors and staff who have helped him so much. He is one tough warrior which is how he got his nickname Warrior Walt. In the long run, his treatment plan was to be 12-18 which we were here the entire time as we live 5 hours away from our Indian Reservation. So we are also so grateful to the Ronald McDonald House of Charities of Eastern Wisconsin for making it possible to make sure he got the treatment he deserves, he would not have made it this far without it. He was given a 3% chance of a 5-year survival rate.. He has had multiple rounds of chemo, a resection surgery, 2 stem cell transplants, immunotherapy, standard relapse protocol, ICE Chemo, full cranial spinal radiation. He is high risk and has been through so much but takes on each new battle like the warrior he is. On May 29th 2020 they had declared him NED ( no evidence of disease however they did not do an MRI to rule out any CNS cancer from Neuroblastoma. He went in for one round of immunotherapy which was to last 6 months. Upon going in for his second round of immunotherapy(three weeks after being told he was NED) the night before his balance seemed a tad off. So when we went for admission mentioned it to the doctors. They did a CT of the head that came back normal but they wanted to be sure so ordered a body MRI the next day pushing off his immunotherapy. Later that day they walked in with the big dogs and could tell it was not good news. Informed us that the MRI showed a tumor in his spine up to the lower part of the back of the brain which was in the CNS. He went through Chemo and antibodies and it did progress so they looked into clinical trials and Neuroblastoma specialists as we know he is a true Warrior and the force is with him always. We do know this means that travel to a different state was most likely. In September we found out and agreed the best option will be North Carolina with Dr. Sholler as they have more treatment options. so the second week in September he was transferred. His treatment seemed to be helping, but upon his MRI in November 2020 we found out that cancer had spread. So the treatment team with Dr. Sholler and the rare and solid tumor program will not give up on him. So immediately they came up with a plan. He started ICE Chemo a few days before his 2nd birthday, regardless he still had a great birthday. So he Went inpatient and received cranial spinal radiation that lasted until Christmas Eve of 2020. He had scans on January 28th, 2021, and on February 2nd he was transferred to NY for what we thought was about 10 weeks to get the 8h9 antibody which is a clinical trial.. Following his second round of ICE Chemo and Stem Cell Rescue. We had been out there for two cycles of the 8h9 clinical trial when he had a brain bleed and while having surgery he suffered a stroke and when he was discharged from Memorial Sloan Ketteringr to help him regain function and mobility due to the stroke. At that time came up with the best plan for him with multiple teams he would need and a good Neuroblastoma program at Seattle Children's which he has started with Immunotherapy and will go from there. Each day he gets a little better and walks and runs now and counts have never been so good! He plays like a normal kid. The doctors are so happy, they state every time something happens Warrior Walt has always surprised them

Thank you for sharing your story about your little warrior. He sounds so very strong as do you.

 

[ZellyB]

Checking back in with an update. I had my first scans since my change in treatment to Trodelvy. I always have a bone scan and CT scan to check for any progression. I work in the hospital where I have treatment so can look at my radiology reports on my own. I know I shouldn't, but it's hard to wait. Anyway, I did have two new small spots on my bones (which doesn't worry me too much as long as it stays in my bones), but then my CT scan indicated I had two new spots on my liver that the radiologist thought was suspicious of metastatic disease. I spent two days pretty devastated by that. BUT, when I went to see my oncologist, he was not especially concerned. He felt that the way they described the spots it didn't seem typical of metastatic progression. And, even if it were, we could likely treat with spot radiation. Additionally, the CT scan had show significant reductions in a tumor on my breast bone which extends into my soft tissue as well as several lymph nodes. I had read all of that, but of course got consumed by the idea of liver mets. Suffice to say that he was actually pretty happy. In the over two years I've been undergoing treatment for my metastatic disease, we've never really seen any reductions, only stable disease, so he was very pleased to see that, and, another reason he is somewhat doubtful that the liver spots are cancer. He is going to do a liver MRI in about 6 weeks to get a better look, but I'm hopeful that he's correct and that we still have the cancer mostly relegated to my bones. It may cause me a lot of pain, but it's not going to kill me anytime soon as long as it stays put.

The new chemo is easier to tolerate. It hammers my blood counts and brings on some fatigue, but otherwise leaves me feeling better than the old doxyrubicin treatments. We also booked our first Disney Cruise! It's a 3-day Halloween cruise on the new ship, the Wish, and we are sailing concierge. It's a splurge to be sure, but no time like now to do all those bucket list things we've wanted to do.

 

[Pea-n-Me]

Checking back in with an update. I had my first scans since my change in treatment to Trodelvy. I always have a bone scan and CT scan to check for any progression. I work in the hospital where I have treatment so can look at my radiology reports on my own. I know I shouldn't, but it's hard to wait. Anyway, I did have two new small spots on my bones (which doesn't worry me too much as long as it stays in my bones), but then my CT scan indicated I had two new spots on my liver that the radiologist thought was suspicious of metastatic disease. I spent two days pretty devastated by that. BUT, when I went to see my oncologist, he was not especially concerned. He felt that the way they described the spots it didn't seem typical of metastatic progression. And, even if it were, we could likely treat with spot radiation. Additionally, the CT scan had show significant reductions in a tumor on my breast bone which extends into my soft tissue as well as several lymph nodes. I had read all of that, but of course got consumed by the idea of liver mets. Suffice to say that he was actually pretty happy. In the over two years I've been undergoing treatment for my metastatic disease, we've never really seen any reductions, only stable disease, so he was very pleased to see that, and, another reason he is somewhat doubtful that the liver spots are cancer. He is going to do a liver MRI in about 6 weeks to get a better look, but I'm hopeful that he's correct and that we still have the cancer mostly relegated to my bones. It may cause me a lot of pain, but it's not going to kill me anytime soon as long as it stays put.

The new chemo is easier to tolerate. It hammers my blood counts and brings on some fatigue, but otherwise leaves me feeling better than the old doxyrubicin treatments. We also booked our first Disney Cruise! It's a 3-day Halloween cruise on the new ship, the Wish, and we are sailing concierge. It's a splurge to be sure, but no time like now to do all those bucket list things we've wanted to do.

Praying for stable disease, Zelly! So exciting about the cruise! Sounds wonderful!

 

[Grace&Carolinesmom]

ZellyB - Glad to hear the new chemo drug has fewer side effects than the previous chemo. That's very promising that your oncologist isn't concerned about the liver spots.

The Halloween cruise sounds like a super fun vacation!! Enjoy the concierge level to get some needed pampering

 

[Grace&Carolinesmom]

GeekzRus - You and your little guy are definitely warriors!! I know we all say we would move heaven and earth to find a cure for our children when they are sick but you truly have lived it. It is so encouraging to hear that he has made nothing short of miraculous progress in the pursuit of wellness and to finally be able to start living the life of a typical child.

I agree that Childrens of Wisconsin and the Ronald McDonald House Charities of SE WI are a godsend. My youngest DD21 has seen numerous specialists at CHW over the years and they have all been top notch doctors. I can remember meeting various parents over the years who were staying at the Ronald McDonald House who were also so grateful for their kindness. We are lucky to live only about 25 minutes from CHW so our frequent appointments were never a hardship.

 

[Grace&Carolinesmom]

Quick update: My radiation is OVER. YAY!!! But....some areas of my skin are raw and sometimes painful. BOO!! I am still slathering on Cerave and Aquaphor daily to help my skin heal but it is a slow progress.

My next appointment is a mammogram on June 20. Crossing my fingers that it shows nothing new.

 

[ZellyB]

Quick update: My radiation is OVER. YAY!!! But....some areas of my skin are raw and sometimes painful. BOO!! I am still slathering on Cerave and Aquaphor daily to help my skin heal but it is a slow progress.

My next appointment is a mammogram on June 20. Crossing my fingers that it shows nothing new.

Yay! indeed for finishing radiation. I ended up with some pretty bad skin burns from radiation and they are very painful so you have my sympathy. I hope it heals up quickly.

Sending you prayers for a clear mammogram on June 20.

 

[Pea-n-Me]

Quick update: My radiation is OVER. YAY!!! But....some areas of my skin are raw and sometimes painful. BOO!! I am still slathering on Cerave and Aquaphor daily to help my skin heal but it is a slow progress.

My next appointment is a mammogram on June 20. Crossing my fingers that it shows nothing new.

Congratulations!! I hear you, too. I had third degree burns in some places and it was rough. But it healed fairly quickly, if I recall, and I was glad to be done with that!

 

[CaleCakes]

ZellyB and Grace&Carolinesmom, happy to about your progress.

I had a little set back I wasn't emotionally prepared for. Memorial weekend, the Sunday into Monday I had some severe stomach pains. Around 2am I have the genius idea to have a glass of milk to see if that would settle my stomach. Well it had the opposite effect and I vomited almost instantly- several times over. I slept a lot of Monday and felt best laying down curled up. Could have been a 24 hour bug, could have been that I over did it the week before with too many activities and running around. I don’t know. I physically felt better on Tuesday but Wednesday morning when I went to treatment my WBC was down and I couldn't have treatment. I was super upset, cried a lot in the office. I just really want to keep on track and be done, and this was the first of such occupancies I was trying to figure out what I did wrong that week. But anyway, doctor and nurses reassured me these things happen as the chemo kills the bad and good cells. So with that I got a shot, zometa I think, and went back Thursday for another. I didn't feel achy from either but I did take the Claritin for a few days just in case. Was able to go again today for labs and my numbers were back up so I got treatment #9... 3 more to go. Hopefully no more setbacks and I'll be done on the 27th. I then have a mammogram and ultrasound on June 30 and I see the surgeon again on July 8th.