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Re: Kadcyla Side Effects
I have an update to my initial post. I'm back on Kadcyla as of June 3, 2016 and I am not experiencing any new side effects. Liver enzymes and platelets are normal. In fact all my CBC and metabolic panel numbers are normal. (I don't get tested for tumor markers, because I'm one of those people whose tumor markers never change.)
I'm not having trouble breathing. I'm not getting headaches. I have mild neuropathy, but Abraxane causes that. I don't even have diarrhea anymore, after several years of having it more or less constantly. My blood pressure is on the high side most of the time, but I've had some low-to-normal readings as well. I have acid reflux, but it hasn't gotten worse. I take Nexium and Zantac twice a day each to control that. The major difference between then and now is I used to be living in an old apartment building in Boston and I now live in my own house in Denver, Colorado. Both the reflux and the neuropathy seem to be aggravated by environmental factors. I have become extremely sensitive to all manner of volatile organic compounds--diesel fumes, smoke, chlorine, pesticides, air fresheners (especially the solid or plug-in ones), perfume, mold toxins, and who knows what else. I have roommates, but since I control the space I'm able to have a fragrance-free house most of the time. I'm wondering if the change of environment is the reason I'm tolerating Kadcyla so much better. |
Re: Kadcyla Side Effects
Hello everyone... could you tell me what CA stands for ? I read your comments and keep seeing CA with your numbers and I dont know what it is abbreviated for. Thank you.
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Re: Kadcyla Side Effects
It refers to tumor markers in the blood. That's a way to monitor the cancer. Rising markers can mean more cancer; markers in the normal range are considered a sign of good control. Since I've always had normal tumor markers, we don't even bother looking at them anymore.
Amy |
Re: Kadcyla Side Effects
Thank you! I dont have the tumor marker. I went back to all my lab works looking for CA !!! couldnt find it well now I know why. Again Thank you for reply Mtngrl
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Re: Kadcyla Side Effects
There’s a couple of different types of tumour marker tests, and your doctor has to order them. I know in Ontario, OHIP will only pay for the CEA test once a month. So far, I’ve had the CEA and CA-30-15 blood tests twice, and both times they were normal. I don’t think these tests are very accurate for me, and that I'm one of those people who never get elevated antigen levels. That being said, I think I’m due for both of these tests again, just to make sure they haven’t gone up.
¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ 12/15 – First mammogram 01/16 – Second mammogram and ultrasound. 01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date. 01/16 – Chest scan and bone scan done– all looks good. 02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer). 02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case. 03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2. 03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now! 03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months). 04/16 – Have port put in. 04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment. 06/16 – Finished chemo! One month off and then I start radiation. 06/16 – Start Tamoxifen. 07/16 – First radiation treatment – 24 more to go! 08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II 08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery. 09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4. 09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan. 09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good. 09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery. 10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen. 10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery. 10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify. 10/16 – Brain MRI – NED! 11/16 - CA-15-30 blood test – Tumour markers are normal at 19. 11/16 – Second CEA blood test – Tumours markers are still normal at 1.6 11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19 11/16 – Develop lymphedema and have to wear a sleeve 12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working! 12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now. 03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol! 05/17 – Second brain MRI scheduled |
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