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MJsHusband · 06-13-2012, 11:06 AM

Hi YanYan,

Thanks. MJ started her fourth cycle of Xeloda/Tykerb yesterday. She usually feels pretty good until the second week, especially the last couple of days.

I've mentioned a brain scan to be on the safe side, but she wants to limit the scans she is getting. Since she has no symptoms of brain mets she doesn't feel there's a need at this point. I was getting concerned with her two incidences of dizziness and falling down, but they haven't occurred since then and can be explained as caused by other things. She never has headaches or any kind of pain like that. It seems from the reading I've done that most get brain scans only after symptoms arise? Has anyone reading this gotten an MRI without any symptoms?

The oncologist wanted her to stay on Xeloda for 6 cycles but it was all he could do to convince her to do 4. She really doesn't like it as you can tell. Honestly, she has no known tumors. All were removed in the original treatment and then the hysterectomy removed all the other known tumors. There's no real way to know if the Xeloda has done anything. Nothing to watch regress or shrink. All that can really be proven is if it didn't work and something shows up on the next scan. She will continue Tykerb as long as it works. I know Tykerb was approved only if combined with Xeloda. I'm not sure how that will work going forward. If the oncologist is required to prescribe both or if he can just prescribe Tykerb alone. I guess there is no way to prove if the patient is taking their Xeloda every day or not so I guess you can just get it filled and not take it? Has anyone else reading this gone to Tykerb only?

MJ is kind in between being able to use either T-DMI or Pertuzumab. She's only had one failed Herceptin treatment so can't be on T-DM1 trials (that I'm aware of) and because she had the Herceptin already, she can't get Pertuzumab(or if she can get it, it may not be covered by insurance. Kind of between a rock and a hard place for now. I'm hoping of course the Tykerb does it's job. At least until T-DM1 is on the market.

Thanks again for your reply. I don't take it as rude or pushy. I'm on here for advice and pass it along to her. She doesn't like to come onto these forums so I do that for her.

I hope your treatment continues to get rid of those skin mets.

Thanks,
Greg

06-13-2012, 11:06 AM	#22
MJsHusband Senior Member Join Date: Apr 2012 Posts: 87	Re: Dizziness Question Hi YanYan, Thanks. MJ started her fourth cycle of Xeloda/Tykerb yesterday. She usually feels pretty good until the second week, especially the last couple of days. I've mentioned a brain scan to be on the safe side, but she wants to limit the scans she is getting. Since she has no symptoms of brain mets she doesn't feel there's a need at this point. I was getting concerned with her two incidences of dizziness and falling down, but they haven't occurred since then and can be explained as caused by other things. She never has headaches or any kind of pain like that. It seems from the reading I've done that most get brain scans only after symptoms arise? Has anyone reading this gotten an MRI without any symptoms? The oncologist wanted her to stay on Xeloda for 6 cycles but it was all he could do to convince her to do 4. She really doesn't like it as you can tell. Honestly, she has no known tumors. All were removed in the original treatment and then the hysterectomy removed all the other known tumors. There's no real way to know if the Xeloda has done anything. Nothing to watch regress or shrink. All that can really be proven is if it didn't work and something shows up on the next scan. She will continue Tykerb as long as it works. I know Tykerb was approved only if combined with Xeloda. I'm not sure how that will work going forward. If the oncologist is required to prescribe both or if he can just prescribe Tykerb alone. I guess there is no way to prove if the patient is taking their Xeloda every day or not so I guess you can just get it filled and not take it? Has anyone else reading this gone to Tykerb only? MJ is kind in between being able to use either T-DMI or Pertuzumab. She's only had one failed Herceptin treatment so can't be on T-DM1 trials (that I'm aware of) and because she had the Herceptin already, she can't get Pertuzumab(or if she can get it, it may not be covered by insurance. Kind of between a rock and a hard place for now. I'm hoping of course the Tykerb does it's job. At least until T-DM1 is on the market. Thanks again for your reply. I don't take it as rude or pushy. I'm on here for advice and pass it along to her. She doesn't like to come onto these forums so I do that for her. I hope your treatment continues to get rid of those skin mets. Thanks, Greg __________________ 08/10 ~ Dx IBC, Her2+++ ER-/PR- Stage 4, mets to liver. Age 43. 08/10 ~ Began 12 weeks of Taxetere/Carboplatin/Herceptin tx [10/10 ~ Scans show liver lesions are gone. NED! 11/10 ~ Ended chemo. Herceptin-only tx 01/11 ~ Mastectomy 03/11 ~ Radiation 07/11 ~ Reconstructive surgery 10/11 ~ PET/CT shows NED :) 01/12 ~ Malignant tumors found in uterus, cervix, fallopian tubes and lymph nodes. Dx as endometrial cancer. Stage III2c 02/12 ~Hysterectomy(all tumors removed). Back to NED. 02/12 ~ Final Herceptin treatment. 03/12 ~ Began Cisplatin/Adriamycin tx for endometrial cancer. 03/12 ~ Tumors dx her2 metastisis, not entdometrial cancer. Back to BC tx. 03/12 ~ CT scan shows NED. :) 04/12/~ Began Tykerb/Xeloda. 06/12 ~ Ended Xeloda. Continuing Tykerb. Still NED. 09/12 ~ PET/CT scans show NED. : ) 04/13 ~ Rash on original breast biopsied as cancer. 05/13 ~ Surgery to remove skin and tissue around rash. Continue Tykerb. 06/13 ~ PET/CT scans show NED : ) 11/13 ~ Jaundice eyes and skin. CT scan show mets to liver as well as peritoneal carcinomatosis with malignant ascites. Began Abraxane/Herceptin tx. 02/14 ~ CT scan shows NED. :)