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Old 05-17-2017, 05:10 AM   #1
TiffanyS
Senior Member
 
Join Date: Sep 2016
Posts: 459
Brief Update

Hello all, I’m back from a great vacation, and was able to enjoy most of it because of the pain meds I was taking. Unfortunately, they did have some side-effects such as nausea, lack of appetite, drowsiness, etc. I was able to keep the nausea under control with medication, but I just had to deal with the rest of the side-effects. I also missed my connecting flight due to my flight from Toronto leaving two hours late, and had to spend a night in Copenhagen. I was not impressed but what can you do! I didn’t let this ruin my trip though.

Unfortunately, I had a bit of a set-back upon my return to Canada, and I ended up in the hospital. I was experiencing shortness of breath and nausea, so I went back to emergency shortly after my return to the country. I had a bad experience in emerge this time around, as they stuck me in a cold room (which I called the freezer) and just left me there all night while waiting to go for tests. Finally, after getting back from my chest exam, I refused to go back in that room, and they moved me to another bed. After getting all of my test results back, they wanted to send me home, however, I insisted that they keep me, saying that I would just be back in emerge in a few hours if they sent me home. The doctor finally called the on-call oncology doctor, who agreed that I needed to be admitted, as it appeared that I had a mild case of pneumonia. They then moved me to another room where I spent the day waiting to be admitted, and was finally admitted that night. By this time, I was exhausted due to jet-lag and not sleeping though whole night. I ended up being in the hospital until Sunday, but, so far, I’m getting better. I finished my antibiotics yesterday, and will probably have a cough for another two weeks, but I’m now back at work and hoping to get back to living my life as normal as possible.

I went for treatment yesterday, and I started the new drug T-DM1. This drug will be a lot easier for me to tolerate, and does not need any pre-drugs like steroids or Benadryl. It will also only take 30 minutes to administer, which means I can work in the morning, and go to the clinic in the afternoon everything three weeks. Overall, it will be a much easier and more convenient drug. I will get four dosages of this drug over the next three months, and then I will go for more scans in order to determine if it’s working. Let’s hope it works because if it doesn’t, I’ll have to go on a trial.

I’m still experiencing back/side pain, however, the pain medication is helping. I had to cancel my first chiropractic appointment because I was in the hospital, but I was able to reschedule for next week, and I’m hoping he can help me. I was told that the pain may get worse before it gets better, so I need to stay on the pain medications for now, however they lowered my dosage so that it’s more tolerable. I was having a hard time tolerating the higher dosage. Once the pain is gone, we will wean me off of the pain pills. I also still have a mild case of Atelectasis, and am still doing my breathing exercises. My doctor told me to hold off on the chest therapy for now, so that I can focus on my treatments with the chiropractor.

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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). I was unable to get a full dose of Docetaxal after my first treatment due to liver enzymes being high.
04/16 – Have port put in.
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.
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 is 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 – Received my genetic test results from Foundation One. It found 11 genomic alterations, 3 therapies associated with potential clinical benefit, and 13 clinical trials from which I might benefit.
03/17 – Second brain MRI –NED!
03/17 – Ultrasound done 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.
04/17 – Was told that I have developed atelectasis due to shortness of breath, and a pulled diaphragm, which is what’s causing my back pain. I need to see a chiropractor physio for chest therapy.
05/17 – Full body CT scan scheduled to see if I’m still “stable”.
05/17 – Bye bye Herceptin/Perjeta/Taxol, hello T-DM1
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