HER2 Support Group Forums - View Single Post - Fed-Up!

TiffanyS · 12-02-2016, 05:56 AM

Does anyone else ever get fed-up! I know I don’t really have a right to complain, because I have to pretty good compared to some people, but I have to admit, I’m starting to get fed-up with treatment. I’m lucky enough not to be sick, tired, or weak, but I do still have to deal with neuropathy, bowel issues, shortness of breath, dry, bloody nose, weight gain, acne, and now lymphedema and hemorrhoids! I just feel like it’s never going to end! I mentioned this to my doctor when I saw her on Tuesday, and she told me to be patient and that it will eventually end, but I’m really getting tired of it. I really hope that I can get a chemo break over the holidays, so that I can enjoy the holidays without having to deal with chemo- side-effects!

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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 normal. 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, 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 one year).
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 scar.
08/16 – 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.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
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 TDM1 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.
10/16 – 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 scheduled for December 14. I can’t wait to find out if the Perjeta is working!

12-02-2016, 05:56 AM	#1
TiffanyS Senior Member Join Date: Sep 2016 Posts: 459	Fed-Up! Does anyone else ever get fed-up! I know I don’t really have a right to complain, because I have to pretty good compared to some people, but I have to admit, I’m starting to get fed-up with treatment. I’m lucky enough not to be sick, tired, or weak, but I do still have to deal with neuropathy, bowel issues, shortness of breath, dry, bloody nose, weight gain, acne, and now lymphedema and hemorrhoids! I just feel like it’s never going to end! I mentioned this to my doctor when I saw her on Tuesday, and she told me to be patient and that it will eventually end, but I’m really getting tired of it. I really hope that I can get a chemo break over the holidays, so that I can enjoy the holidays without having to deal with chemo- side-effects! ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ 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 normal. 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, 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 one year). 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 scar. 08/16 – 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. 09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan. 09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4. 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 TDM1 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. 10/16 – 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 scheduled for December 14. I can’t wait to find out if the Perjeta is working!