HER2 Support Group Forums - View Single Post - Kadcydla versus neurosurgery and paralysis

Jackie07 · 12-31-2013, 12:27 AM

Happened to see this one today on Cancer Connect about how to handle kadcyla side effects:

"Hi all,

I just wanted to share this with any of you on Kadcyla or Herceptin. I used to get Zofran while on the former and used to get blurry vision, dizziness, bitter taste, lack of appetite, constipation, dark urine, palpitations, etc. It got so bad that my oncologist ordered a brain CT which thank G-d came out clean.

I thought it might be the Zofran after researching its side effects online. Although my doctor thought Zofran was more or less without side effects, it's been a few days now since my last treatment and I have practically no side effects. It's a life-changer for me! And I never got the nausea Zofran was supposed to prevent!

So if you're on Kadcyla and have side-effects, try to eliminate any pre-meds and see if it helps. I want to thank you all who gave me advice when I asked if I could discontinue Zofran. Just in case, my doctor gave me Zofran pills that I bought before my treatment to take at home if I got nauseous, but I never needed it.

By the way, I used to get Benadryl while on Herceptin which made me drowsy. Herceptin alone was so much better!

So basically the message is, when we get side effects, it might not be the treatment but the pre-meds, and it's a good idea to see if we really need them. Even doctors don't know as much as we do because we are the ones who actually take them...

All the best to you all! Thanks for your advice & I hope this message will be helpful to many as well. :-)"

12-31-2013, 12:27 AM	#14
Jackie07 Senior Member Join Date: Jan 2008 Location: "Love never fails." Posts: 5,808	Re: Kadcydla versus neurosurgery and paralysis Happened to see this one today on Cancer Connect about how to handle kadcyla side effects: "Hi all, I just wanted to share this with any of you on Kadcyla or Herceptin. I used to get Zofran while on the former and used to get blurry vision, dizziness, bitter taste, lack of appetite, constipation, dark urine, palpitations, etc. It got so bad that my oncologist ordered a brain CT which thank G-d came out clean. I thought it might be the Zofran after researching its side effects online. Although my doctor thought Zofran was more or less without side effects, it's been a few days now since my last treatment and I have practically no side effects. It's a life-changer for me! And I never got the nausea Zofran was supposed to prevent! So if you're on Kadcyla and have side-effects, try to eliminate any pre-meds and see if it helps. I want to thank you all who gave me advice when I asked if I could discontinue Zofran. Just in case, my doctor gave me Zofran pills that I bought before my treatment to take at home if I got nauseous, but I never needed it. By the way, I used to get Benadryl while on Herceptin which made me drowsy. Herceptin alone was so much better! So basically the message is, when we get side effects, it might not be the treatment but the pre-meds, and it's a good idea to see if we really need them. Even doctors don't know as much as we do because we are the ones who actually take them... All the best to you all! Thanks for your advice & I hope this message will be helpful to many as well. :-)" __________________ Jackie07 http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2 NICU 4.4 LB Erythema Nodosum 85 Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d 3 Infertility tmts 99 > 3 u. fibroids > Pills CN 3 GKRS 52301 IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET 6 TCH Cellulitis - Lymphedema - compression sleeve & glove H w x 4 MUGA 51 D, J 49 M Diastasis recti Tamoxifen B. scan Irrtbl bowel 1'09 Colonoscopy 313 BRCA1 V1247I hptc hemangioma Vertigo GI - > yogurt hysterectomy/oophorectomy 011410 Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk DEXA 1/13 1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer. 3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer. Start Vitamin D3 and Calcium supplement （600mg x2) 10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016 7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence. 7-10-2019 CT to check lung nodule. 1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule. "I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa Advocacy is a passion .. not a pastime - Joe