Kadcyla....anyone with brain mets and full brain radiation? How are you feeling?

[Seeshell]

My mom is so sick these days...she's been through so much since I've last posted. progressions, liver mets, brain mets, full brain radiation. CT scan at Stanford shows possible progression to bones. We do follow up petscan and it shows NED!!, but doctors wants to compare scans again. She cant believe what she's seeing. I think its just God at work. Heres the thing. My mom is on Kadcyla and she is feeling worse than she has EVER felt. More weakness, nausea, vomiting. Her numbers all look great. Doctor wants to continue this way. We are doing lots of days of hydration. Anyone else have this reaction to this drug? Now that I write it, it sounds stupid...of course this is normal chemo reaction...but my mom has been fighting cancer for 5 years now. The last 3 have been MBC. This is the worst I've seen her. Her oncologist no way wants to change this med because she believes its working. Will have compared MRI results soon for brain. I hope its not that. Just venting and wondering.

[Snowcone16]

NED! That’s great news! I’m sorry she is not feeling well. I have nausea meds that I have only taken once but they were incredibly helpful. Otherwise, I just make sure to eat little meals all the time like crackers, organic bread/toast...seem to help. And for me, spicy food helps. Also, explore medical mj. That helps with the anxiety related to feeling sick, makes nausea go away, will give her an appetite.

[RLN-overcomer]

Seeshell/ Warrior : You are standing in the gap for your mom doing all that you can to ease her discomfort. I am so sorry to hear your mom is struggling with the side affects of the Kadcla---.,but I am grateful to God she is now NED.

My church sister just got out of a 3 week stay at Mount Sinai Hospital with almost the same metastasis bone, brain and small liver cancers. She was originally diagnosed with cancer 8 years ago. During her stay in the hospital she was was given I.V. chemo which has stabilized the cancer. She is now starting a drug called Cotileb, and will also have her first brain radiation next week, even though the chemo killed a major amount of the cancer, she is not NED. I pray God will take away any discomfort your mom is going through, and for super natural healing for my sister , and your mom.

My friend says your mom should eat lots of organic greens, and fruits. My friend is ingesting organic healthy smoothies. If your mom can't hold down food, ask her doctor for an anti nausea medicine, and maybe medical marijuana to ease her discomfort, so that you and your mom can fully celebrate her NED great news. Medical marijuana comes in many forms. Seeshell please take care of yourself, so that you can continue to take care of your mom. Do your part, but let God do the rest Amen. Sometimes we have to wait for the rain to pass so that we can experience the beautiful sunshine, and rainbows that follow. XoXo

[PJBinMI]

The only thing I wonder about is how direct and clear your mother has been with her onc about just how miserable she is! Maybe I'm reading more into your note than you mean but it sounded to me like the onc may be blowing off your mom's side effects, and if that is what your mother thinks, it might be helpful to have a list of concerns next visit, or even via phone call, more specifics about discomfort, nausea, how much water she is drinking, how much she can eat and how often, that kind of thing. Apply the one to ten rating to things besides pain--fatigue, nausea, dryness, etc. Your mother is really the only one who knows whether the unpleasantness is worth it! And if you are a mother yourself, you know how much we moms want to hang on for everybody else! So hard on everybody! My own mother died of metastatic lung cancer five months after diagnosis and that was sooo much harder on me emotionally than having this lousy mbc myself has been! Do take care of yourself or you will have nothing left over for mom or any one or anything else!

[Seeshell]

thank you for your reply. We have been going to the same cancer center for 5 years. This is our 2nd Onc..since the first one just disappeared one day and no one seems to know where he went off to or why. This new onc has been with us the last 2 years. I have a love hate relationship with her. I feel like I'm able to tell her anything I need to, but not 100% sure she cares much. She is very blunt. She tends to look right past my mother to me for all answers, like shes not in the room sometimes. Mom doesn't want to change doctors at this point. She feels like she's where God wants her to be..just goes with the flow. The onco's only solution is giving stronger anti nausea drugs, but at this moment has not. it is exhausting staying on top of her, but I do my best. Yes, My mom will put on her wig and make up for EVERY appointment and will do her best to be OK for the doctors. I've seen her say she was "fine", when she was just throwing up that morning. She does not like to talk about her cancer at ALL. So that's just a little more insight to my mom. I love her to pieces, she is her OWN person and not a doormat by any means, and lets us have it if we say too much to her doctors!! lol its been such a crazy emotional roller coaster ride, as you seem to well know. There are days I feel I am losing it. Then I put myself in her shoes and shut up my complaints instantly. Thank you for your encouraging words, ladies. Thank God I can come her for advise. I pray a LOT and God has come through for me so much. I am so in awe of those of you fighting this fight, Learning as I go. hugs and prayer to you all. thanks you again.

[Seeshell]

My mother passed away on January 3oth. She so deserves heaven, she fought so hard to get there. I'll always be amazed at her grace and how God brought us through these six years. She will forever be my hero. I've learned so much. I miss her so much. She is my best friend on earth. No one loves you like a momma can. I'm so glad she is not suffering anymore treatments. I kind of feel like I lost her several times over the past year. The brain radiation caused dementia like symptoms at the end..she wasn't herself at all. I've been missing her for quite awhile. I hate this disease. I hate that there is no cure, and I hate that it is so prominent in our world. I hate that you all have to endure all that you do. I do know that there is a God In heaven waiting so we all will win in the end. He has showed me just how real he is through my momma. God bless you all. Thank you for giving me support when I needed it most. I wasn't able to talk to my family or fall apart. I had to be as strong as I could be. I hope I made you proud mom. I'm sure proud of you.