Hello, Melissa. After visiting your website and reading your story, I am saddened to find that you have Her2neu + breast cancer and are stage IV like me. I am adding your website to the list of "blogs I follow" so others can read your story as well. You now have a new follower--me.
Hi, Lisa: Thanks so much. Today, I came across an interesting paper about "durable complete response" for Her2 positive Advanced Cancer like you. Here is the link: https://www.ncbi.nlm.nih.gov/pubmed/?term=28895005 As the paper suggests, wish you can achieve complete cure that has not been thought possible previously! DW
Thanks for that link, DW. For me though, when I was diagnosed stage IV, I was treated with Herceptin(1 year). It worked for a while with the help of Perjeta(1 year)and Taxotere (dropped after 9 months). I remember reading everything I could find about herceptin and saw some wonderful responses for people being treated for years with herceptin alone as their first-line of treatment like this paper shows. I wanted those results to be mine, but it was not to be. TDM-1 (Kadcyla) is second-line treatment. As you probably know, I am still on herceptin but with the added bonus of a harsh chemical attached to it. It has been wonderful for me--over 3 years. Scan in a week. Hoping for good news.
Wish you have a good news. I understand it is tough situation for patients with mets. But study says that once a patient becomes NED (or NEAD), she will live a lot longer than average (http://www.cancernetwork.com/her2-positive-breast-cancer/metastatic-breast-cancer-patients-who-attain-no-evidence-disease-live-longer). Furthermore as the new drugs becomes available at unprecedented speed, we will be surprised how long advanced cancer patients could live (and enjoy quality life) in the future thanks to these drugs. I am also crossing fingers for my close person as well!
I am crossing fingers too in hopes that your loved one responds to treatment and lives a long and happy life. Bravo to you as you continue to research on their behalf.
Just want to say "Thanks" for including me on your blog list. To be honest, I didn't even know mine was listed here until I Googled my name trying to get to my Gmail account. Sometimes I feel overwhelmed with trying to keep up with my blog-- and so I'm not as aware of others' as I'd like to be. Anyway, I wish you the best in how you're reaching out to other cancer survivors. Warm Regards, Connie Rosser Riddle
You’re welcome, Connie. I am trying to help those that want to be heard or want to help others—a sort of “paying it forward”. I read your recent post about a literary agent telling you to increase your following on your social network accounts before they would consider your writing for publication. This is a hard endeavor as you can see from my own number of followers (pretty dismal). Maybe a few followers might come to your site from here. I hope so. Good luck with your book!
Hi Lisa, I just found your page and realized that I am on your list of blogs to follow! I wanted to say a big and sincere thank you for including me. Writing means a lot to me, as does MBC advocacy, and I really believe that there is so much power in telling our stories. I’m so grateful to you for including my blog and helping to spread the word about it. I feel like the more wide-spread our stories are, and the more stories we get out there, the more we drum up empathy and improve the public’s knowledge of MBC. In doing so, I hope that telling our stories ultimately inspires more people to join the fight for more MBC research. I know I’m preaching to the choir here :), just wanted to try to express how grateful I am that you included me here. Thank you!!!!! <3 <3 - Becky Dickson (p.s. this reminded me that I desperately need to update my blog, so thank you for that as well!!)
Hi, Becky. You are welcome! This comment is coming incredibly late. I apologize for that. Life went in all kinds of directions, so I have not updated my blog in a very long time. Today is update/catch-up day.
I have been on Kadcyla for about 2.5 years and I am doing well. My biggest problem has been low platelets. I was wondering whether you found anything that helped boost your platelets. Also, have you had to extend the time between treatments to more than 3 weeks on a regular basis? What is your current dose? I am a bit nervous about my lowered dose, and taking 4 weeks between infusions for the next two infusions. My platelets were at 78,000 last time, despite waiting four weeks after the prior infusion.
Hi Jill. First I want to apologize for my neglecting my blog and neglecting to respond to comments like yours. Hope Kadcyla is still working its magic for you. In response to your questions: My current does is 20% less than the original dose. It was reduced due to neuropathy in my fingers and toes. My platelets swing from the 70,000 to 80,000 usually. Recently though it reached 100,000! That was weird, but I will take it any day. I know of nothing that can be done to increase platelet counts other than possibly reducing how much drug is given or spreading out the treatments to longer than 3 weeks which your oncologist did for you. I think that waiting an extra week is a good idea so your body has more time to recover. I have wanted to go to 4 week intervals for a long time. But every time my cancer is stable enough to consider it, my cancer acts up. So every 3 weeks is my regular routine. The only time I have had a longer time between treatments is when I had radiation or a surgical procedure. I think the longest between treatments has been 6 weeks.
I read your blog explaining the changes, tests, and anxieties you are experiencing. Thank you for sharing yourself so honestly. My heart goes out to you during this time of waiting.
Hi there,
ReplyDeleteI am also a Metastatic BC patient on Kadcyla. I like reading about how others are doing on the drug.
Best wishes,
Kel
Thank you for reading, Kel. I look for blogs to read by people on this drug too. I hope your time with this drug lasts a long time. It is a great one.
DeleteGood Morning!
ReplyDeleteI wanted to introduce myself and share my new blog site. Strengthsinourstories.com
I look forward to sharing our stories.
Melissa
Hello, Melissa. After visiting your website and reading your story, I am saddened to find that you have Her2neu + breast cancer and are stage IV like me. I am adding your website to the list of "blogs I follow" so others can read your story as well. You now have a new follower--me.
DeleteThis comment has been removed by the author.
ReplyDeleteHello:
ReplyDeleteYour blog is very helpful. Thanks for the wonderful information.
DW
Hi, DW. I am glad you found my blog and especially glad you thought the information helpful! Feel free to ask questions if any should cross your mind.
DeleteHi, Lisa:
DeleteThanks so much. Today, I came across an interesting paper about "durable complete response" for Her2 positive Advanced Cancer like you. Here is the link: https://www.ncbi.nlm.nih.gov/pubmed/?term=28895005 As the paper suggests, wish you can achieve complete cure that has not been thought possible previously!
DW
Thanks for that link, DW. For me though, when I was diagnosed stage IV, I was treated with Herceptin(1 year). It worked for a while with the help of Perjeta(1 year)and Taxotere (dropped after 9 months). I remember reading everything I could find about herceptin and saw some wonderful responses for people being treated for years with herceptin alone as their first-line of treatment like this paper shows. I wanted those results to be mine, but it was not to be. TDM-1 (Kadcyla) is second-line treatment. As you probably know, I am still on herceptin but with the added bonus of a harsh chemical attached to it. It has been wonderful for me--over 3 years. Scan in a week. Hoping for good news.
DeleteHi, Lisa:
DeleteWish you have a good news. I understand it is tough situation for patients with mets. But study says that once a patient becomes NED (or NEAD), she will live a lot longer than average (http://www.cancernetwork.com/her2-positive-breast-cancer/metastatic-breast-cancer-patients-who-attain-no-evidence-disease-live-longer). Furthermore as the new drugs becomes available at unprecedented speed, we will be surprised how long advanced cancer patients could live (and enjoy quality life) in the future thanks to these drugs. I am also crossing fingers for my close person as well!
I am crossing fingers too in hopes that your loved one responds to treatment and lives a long and happy life. Bravo to you as you continue to research on their behalf.
DeleteJust want to say "Thanks" for including me on your blog list. To be honest, I didn't even know mine was listed here until I Googled my name trying to get to my Gmail account. Sometimes I feel overwhelmed with trying to keep up with my blog-- and so I'm not as aware of others' as I'd like to be. Anyway, I wish you the best in how you're reaching out to other cancer survivors. Warm Regards, Connie Rosser Riddle
ReplyDeleteYou’re welcome, Connie. I am trying to help those that want to be heard or want to help others—a sort of “paying it forward”. I read your recent post about a literary agent telling you to increase your following on your social network accounts before they would consider your writing for publication. This is a hard endeavor as you can see from my own number of followers (pretty dismal). Maybe a few followers might come to your site from here. I hope so. Good luck with your book!
ReplyDeleteHi Lisa, I just found your page and realized that I am on your list of blogs to follow! I wanted to say a big and sincere thank you for including me. Writing means a lot to me, as does MBC advocacy, and I really believe that there is so much power in telling our stories. I’m so grateful to you for including my blog and helping to spread the word about it. I feel like the more wide-spread our stories are, and the more stories we get out there, the more we drum up empathy and improve the public’s knowledge of MBC. In doing so, I hope that telling our stories ultimately inspires more people to join the fight for more MBC research. I know I’m preaching to the choir here :), just wanted to try to express how grateful I am that you included me here. Thank you!!!!! <3 <3 - Becky Dickson (p.s. this reminded me that I desperately need to update my blog, so thank you for that as well!!)
ReplyDeleteHi, Becky. You are welcome! This comment is coming incredibly late. I apologize for that. Life went in all kinds of directions, so I have not updated my blog in a very long time. Today is update/catch-up day.
DeleteHi Lisa,
ReplyDeleteI have been on Kadcyla for about 2.5 years and I am doing well. My biggest problem has been low platelets. I was wondering whether you found anything that helped boost your platelets. Also, have you had to extend the time between treatments to more than 3 weeks on a regular basis? What is your current dose? I am a bit nervous about my lowered dose, and taking 4 weeks between infusions for the next two infusions. My platelets were at 78,000 last time, despite waiting four weeks after the prior infusion.
Thanks for your help!
Jill
Hi Jill. First I want to apologize for my neglecting my blog and neglecting to respond to comments like yours. Hope Kadcyla is still working its magic for you. In response to your questions: My current does is 20% less than the original dose. It was reduced due to neuropathy in my fingers and toes. My platelets swing from the 70,000 to 80,000 usually. Recently though it reached 100,000! That was weird, but I will take it any day. I know of nothing that can be done to increase platelet counts other than possibly reducing how much drug is given or spreading out the treatments to longer than 3 weeks which your oncologist did for you. I think that waiting an extra week is a good idea so your body has more time to recover. I have wanted to go to 4 week intervals for a long time. But every time my cancer is stable enough to consider it, my cancer acts up. So every 3 weeks is my regular routine. The only time I have had a longer time between treatments is when I had radiation or a surgical procedure. I think the longest between treatments has been 6 weeks.
DeleteI read your blog explaining the changes, tests, and anxieties you are experiencing. Thank you for sharing yourself so honestly. My heart goes out to you during this time of waiting.
ReplyDeleteThank you for taking the time to read my blog and to leave a comment. I truly appreciate it.
Delete