Hello All!!! I am not sure exactly how this works, so I am just sharing the story I posted as part of my Profile. Thanks for "listening."
I have HER2+ MBC. I originally was diagosed with BC in 2000 (not HER2+), had a mastectomy, and underwent standard chemo. I was on Tamoxifen for 5 years. In 2014, I was shocked when the cancer reoccurred. I was diagnosed with same BC as before, but it was now HER2+. I participated in a clincial trial which I later found out was for Kadcyla. I then started infusions of Herceptin, which I have been doing every 3 weeks. Several months ago I started to have heart issues so the Herceptin was discontinued. In the interim, I developed a small brain lesion and had surgical radiation for it - I don't yet know the results. I am now on heart medication and have just started on a new treatment regime - a Herceptin infusion every 3 weeks plus daily doses of oral chemotherapy - Tucatinib and Xeloda. I am interested in others' experiences with this paricular treatment, as well as others' general experiences in dealing with MBC in the long-term. Thanks very much.
Written by
TazBob
To view profiles and participate in discussions please or .
I’m excited to hear that you’re getting similar therapy to mine. Im taking Xeloda and Tucatinib. I’m HR+ but I have a mutation in my her2 gene so oncologist thought Tucatinib can target my cancer cells. But I don’t need herceptin.
Background: I was on Piqray for 18 months, stable lesions on Petscan but tumor markers kept going up. Brain MRI showed 12 small lesions. They were radiated and we switched to this new protocol. After two months, brain mri showed significant shrinkage of Mets, Petscan report said lesions reso lved and my markers went from 1389 to 79. Needless to say, I’m thrilled. I’m getting another brain mri soon. Of course I’m wondering whether Tucatinib or radiation did the heavy lifting.
Even though I’m using voltaren cream on hands and feet to prevent HFS, commonly caused by Xeloda, I still have very dry fingertips.
Thanks very much Helen. I am going to check out the voltaren cream. Have you been having side effects fom the Xeloda and Tucatinib (e.g., diarreha, nausea)? If so, what have you tried besides medications like Zofran and Immodium? Thanks again.
I’ve never had nausea that required meds, maybe just a teeny bit , but could also have been from stress. I get diahrrea every few days which I immediately follow up with immodium, it gets better, then comes again in a couple days.
Besides voltaren, I use Udderly Smooth with Urea — cream (Amazon) and I also use Vaseline or Aquafor.
Hi Ivdid quite well on Kadcyla. From memory it hold the cancer back for over a year. Then I got liver and brain mets. Then had Gamma radiation for brain mets and switched to Enhertu. I've been on this drug just over a year but new brain mets were found in October and last month I had more Gamma radiation but stayed on Enhertu.. the rationale for this is that thx Enhertu was holding back recurrence in the body and had held back the brain mets for some time too.
I had a much easier time on Kadcyla than Enhertu. On day 4 when I'm coming down from the steroids i start to get very tired and lose my appetite which leads to me just eating snacks and sweets ... not good for me with my blood glucose condition. I have Enhertu every 4 weeks. It was changed from 3 to 4 when I couldnt tolerate the nausea.
I've had 4 separate treatments to numerous brain mets. All have been successfull. The key is to have them treated when they're tiny otherwise the eligibility criteria on size may not be met. Also the measurements for combined mets is taken, not the size of each met.
If there's anything else you want to know/I can help you with please ask.
Thanks very much for your response Adnersl. So, every time a brain met shows up, you are able to get radiation? Is Gamma radation different than other types of radiation? Thanks again.
Gamma is the term used when targeted radiotherapy is used on the brain. When targeted radiotherapy is given to other parts of the body it's termed stereotactice but they're the same method - aimed at destroying only the cancer cells.
As for am I able to get radiation to the brain every time a met turns up... theoretically, yes. Though 2 or 3 generally get identified together.
Sometimes the mets have been so small the radiographer reporting on them has not been able to determine whether they're mets till eg the next 3 month scan.
I was told by the specialist that if a met returns in the same place it cannot be treated with Gamma radiotherapy. Mine have always been dotted around and none of those treated have come back. It can take months for the mets to reduce to a point they can't be seen though sometimes they can still be seen but are clearly inactive. There's a term for this but I can't recall what it is.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
HER2+
xgeva/Denosumab 
Mom has stage 4 mbc. looking for hope. 
First line of treatment 
