Update on Paula/Cancer Fightin' Words

[TiffanyS]

Hi Paula, I got Neulasta during my first round of chemo, which I got every three weeks, however, now that I’m getting Taxol two weeks in a row with a week break, they cannot give me Neulasta as it stays in the system too long, and interferes with the chemo. Instead, they give me Neupogen, which I take for two or three days in a row after chemo, depending on how low my white blood count is. You have to fill the needle yourself, and they tell you how much to give yourself each day. This brings up my white blood count, so that I can still work and go out and about, but does not stay in my system long enough to interfere with chemo. You should ask your doctor about Neupogen.

My doctor told me from day one to wash my hands often, not to touch my face, not to hug people, especially kids, and to avoid crowds when possible. I also wash all fruits and vegetables with soap and water. Also, if anyone around me is sick, I’m to leave the room, or move as far away from them as I can. So far this has worked for me, as I have not gotten sick since last December, which was before I was diagnosed.

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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-15-3 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
12/16 – CT Scan scheduled for December 14. I can’t wait to find out if the Perjeta is working!

[StephN]

Hi Paula,
Great to hear you had such a nice Thanksgiving.

I have a couple of comments on your last post. With weekly taxol I DID get neulasta (it was new then) and only had to miss one treatment due to rock bottom counts. However that was part of the protocol on he trial I was on. I also was getting Navelbine with taxol, so that was a double whammy.

When I first got Herceptin I also had the shaking chills, and no amount of blankets and hot tea would stop it until my body had a chance to process enough of that loading dose. Never had that again except one time when I took a "Herceptin holiday" when I was on that drug alone as maintenance and went on a long trip.

As for living in a germy world when blood counts are low, I mainly tried to avoid sick people. I would run away from anyone coughing or sneezing or even clearing their throat. I would hang back and look at the checkout lines to see if anyone in the line or the clerk was showing any symptoms. I never touch a gas pump handle with out a paper towel and use the wipes for grocery carts or hand baskets. These are my habits still today.

[Paula O]

Thanks for your input too, Becky, Tracy, Tiffany, and StephN.

I'm going to ask about the Neupogen if my count is still low on Wednesday. My diet is high in raw fruits and vegetables. I was thinking I am ok with cleaning the produce with vinegar water and peeling what I can but maybe not.

My daughter has a cold. We are being very careful, sure hope I don't get it.

Have a nice weekend.

Paula