Back Pain

[TiffanyS]

Thanks Juls, I discussed my CT scan results with my oncologist during treatment yesterday. She doesn’t think the results were as bad and I do, and she was very happy that the lymph nodes were stable, and, while the nodules on my lungs did grow a little bit, they are all very small and will not cause any health issues to me at this time. I asked her how many nodules I had on my lungs, and she said she didn’t know. I counted 14 on the report, however, she advised that there were probably more than that. She did advise, however, that not all of them will be cancerous. There’s no way of knowing for sure what nodules are cancerous and what ones are not though, without doing a biopsy, and it’s too difficult to do that with so many nodules. Besides, lung biopsies are only 80% accurate, so there’s really no point in doing one.

My doctor and I discussed transferring me to the drug T-DM1, however, she thinks the Perjeta/Herceptin/Taxol treatments still have activity, as they stopped the growth of the lymph nodes and some pulmonary nodules, and slowed down the growth of the other nodules which have increased by only 1-2 mm. She advised that if I transfer to T-DM1 now, and it doesn’t work, OHIP won’t pay for me to take Perjeta and Herceptin again. We decided that I would continue with the Perjeta/Herceptin/Taxol until I get back from my trip in mid-May, and then I will go for another full body CT scan, and, based on those results, we will either continue as is, or transfer to the T-DM1. She also advised that she will give me a 50% dosage of chemo before I go to visit my family at Easter, so I don’t have to fly with bad chemo side-effects, and I will take a chemo break before leaving for my trip to Europe.

I then followed up in regard to the genetic testing, and asked when I could expect an appointment for my blood tests. It turns out that this test does not require a blood test, and that she sent a sample of tissue from my tumour to Foundation One. Apparently they only do this test for free for 10 patients every year, and I was lucky to have been selected for these test. My doctor actually got the test results yesterday, and she printed a copy for me to read, and said we would discuss these results at my next appointment in two weeks. I gave the report a quick overview yesterday (it’s quite long) and it found 11 genomic alterations (mutations), 3 therapies associated with potential clinical benefit (medication that might help against 3 of these mutations), and 13 clinical trials from which that I might benefit. I ask my doctor if there were any clinical trials I could participate in now, and she advised that it’s too early to put me in a trial, as right now, my current treatment plan is working (although not as well as I would like it to), and, once it stops working, I still have to try T-DM1.

In regard to my back pain, she has no idea what’s causing it. My bones and spine looked good on my CT scan, and her only suggestion was that I pulled a muscle, or that I had a gull bladder attack. She gave me a perception for Percocet for the pain, and told me that if the pain persists, she’ll send me for an x-ray. In the meantime, my back pain as been much better these last few days, so, maybe it really was just a pulled muscle. If it was, it must have been really bad, as I’ve never experienced that much pain before in my life.

I also went for a brain MRI on Monday evening, but my oncologist didn’t have the report back. She took a quick look at the scan, and said it looked good, but, she told me not to quote her on that as she’s not a radiologist. As a side note, my doctor also sent me for an ECG, as my heart rate has been up for the last four months. My last echo results were down one point, and I’m due for another echo in the next couple of weeks. I hope everything is okay, as I really don’t want to take a Herceptin break right now.

Anyway, that’s all that’s going on with me right now. For now, I’m just going to continue living my life as normally as possible, and I’m looking forward to my upcoming trip to Europe.

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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 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 Second CA-15-30 blood 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.
01/17 – A second “pimple” shows up on chest wall, as well as a small lump under the skin. My doctor thinks it’s scar tissue and will monitor it for now.
0/17 – Started to develop severe back pain – worried the cancer has spread to my spine.
03/17 – Third CEA blood test and CA-15-30 blood test – Both normal at 2.5 and 25
03/17 – CT Chest scan to see if there’s improvement to chest and lungs – results are mixed. The good news is, lymph nodes are stable, there was improvement of previous lung changes due to radiation, and the cancer has not spread to my bones, spine or liver, etc. The bad news is that while some lung nodules remained stable, others increased by 1-2 mm and new ones have shown up. All of them were less than 1cm.
03/17 – Second brain MRI –awaiting results
03/17 – Ultrasound scheduled to determine size of “pimples” on my chest wall. They will follow up with a second Ultrasound in three months, to see if they are growing
05/17 – Full Body CT Scan Scheduled to see if I’m still stable