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

Re: Brief Update
 

Hi Tiffany

Great that you had a good vacation. Not so good about the hospital stay. Hope you are improving.

Re TDM-1 - had my 4th cycle 2 weeks ago - no tiredness or anything this time! Hope you are ok on it!
Take care
Juls

Re: Brief Update
 

Tiffany,

I'm so sorry about the pneumonia and collapsed lung. That can take a lot out of a person. (I know from personal experience.)

I hope you get a good response to the TDM-1. Most people tolerate it pretty well.

You do a good job of paying attention to your body and sticking up for yourself. Those are essential skills in our world!

Best wishes,

Re: Brief Update
 

Thank Amy,

I learned after I had my recurrence that no one will advocate for me but me, and that I need to be on top of things. After finding out about my Atelectasis, I’ve decided that I need to be more hands-on. My doctor sees so many people, she can’t keep on top of everything, and if I don’t constantly remind her to do things, they won’t get down. It’s sad that this is the way thing are, but, what can you do.

I really hope that the T-DM1 works for me longer than the Perjeta/Herceptin/Taxol did. I’d like to get at least a year out of this drug, and, by then, hopefully Neratanib will be on the market.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
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 – Hospitalized with a mild case of pneumonia.
05/17 – Full body CT scan show progression to lungs and chest – Bye bye Herceptin/Perjeta/Taxol, hello T-DM1

Re: Brief Update
 

On another note, Thursdays are normally my worst days for chemo side-effects, however, so far, I don’t have any side-effects from the T-DM1. I’ll have to wait until tonight to see if I can get any foot/leg spasms.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
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 – Hospitalized with a mild case of pneumonia.
05/17 – Full body CT scan show progression to lungs and chest – Bye bye Herceptin/Perjeta/Taxol, hello T-DM1

Re: Brief Update
 

Hi, Tiffany:

I am sorry to hear your recent hospital stay. I hope TDM1 is the miracle drug that works for you for many many years .

I am still on THP, I am going to have my No. 12 infusion next week. Both you and Amy have encouraged me to continue if it is tolerable. I took your advice even though I don't see anyone did more than 9 treatments recently.

Re: Brief Update
 

Hi Tiffany,
Glad you enjoyed your holiday - I strongly believe in making the most of what has now become precious time. Good luck with the TDM-1.
Best wishes.....Pam

Re: Brief Update
 

Thanks Pam. I agree, and am going on another trip at the end of September, and am already planning two more for next year. Let’s hope the T-DM1 works so I’ll still be around and able to travel.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
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 – Hospitalized with a mild case of pneumonia.
05/17 – Full body CT scan show progression to lungs and chest – Bye bye Herceptin/Perjeta/Taxol, hello T-DM1

Re: Brief Update
 

Thanks Spring. I’m glad to hear that you staying the course and doing 12 treatments of Taxol. I know it’s a lot, but, it’s worth it.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
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 – Hospitalized with a mild case of pneumonia.
05/17 – Full body CT scan show progression to lungs and chest – Bye bye Herceptin/Perjeta/Taxol, hello T-DM1

Re: Brief Update
 

Hi Tiffany
Just checking in!

How's the treatment going?

Hope all good!
Juls

Re: Brief Update
 

Hi Juls, I am back in the hospital regarding my back/side/stomach pain. I will explain more later when I have access to a keyboard, but please know that I am fine and getting to thé bottom of things.

Tiffany

Re: Brief Update
 

Hi Tiffany

So sorry that you are in hospital!
I did wonder if something had happened.
Hope you are feeling better soon!
Take care
Juls

Re: Brief Update
 

So sorry you are in hospital!
Hope you are feeling better soon
Carol Ann

Re: Brief Update
 

Hello all, I thought I'd send a brief update since I haven't been online for a while. I've had family in town this weekend, and it's been crazy busy. As an update, I was sent home from the hospital two Friday's ago in order to get treatment, as the hospital has a policy that they can't give you treatment if you are and in patient, so I had to check out. I had treatment on the Friday and went home right after. I met with the hospice/home care doctor, picked up some prescriptions, and then went home to wait for the home care nurse, who was horrible. After she left, we all went to bed, and I woke up on Saturday morning feeling horrible. I had a bad reaction to the T-DM1, and felt very tired and nauseous and weak. After a crazy weekend, and waking up again on Sunday morning feeling horrible, we decided to come back to the hospital. So, after spending a few hours in the emergency last Sunday, I was checked back into the hospital. At first I was in the maternity ward, but I have since been moved to palliative care, and it is much nicer being here. It's like being in a high class hotel. Anyway, I don't know how long I will be here, but it will probably be until I need to check out for my next treatment in two weeks. In the meantime, I've been really busy with non stop visitors (friends) and doctor's visits, etc. I have a meeting scheduled with my whole medical team for Wed, so we can get a better idea of when I will be getting out of here. I think my step-mother wants me to stay, because as my care giver, she is having a hard time staying on top of all of my medications, and when they are due, etc. I can't stay here forever though, so I have a feeling she won't get her wish.

I will try to keep you updated more often, however, I'm still getting used to my new lap top, and, when I do have some free time, I'm usually exhausted and need to take a nap.

Re: Brief Update
 

Oh, Tiffany, I'm so sorry you've had such a rough time! Sending love and light.

Amy

Re: Brief Update
 

Get plenty of rest, Tiffany. So sorry to hear that you are having a bad time. I hope the reaction to TDM-1 settles and that you get a good response. Good luck for Wednesday - sounds like you deserve a break.
Best wishes.... Pam

Re: Brief Update
 

Hi Tiffany

Sorry to hear that your having a rough time & hope you get out hospital soon!
Take care
Juls


(Just had my 6th IV of Kadcyla last week. I'm told being tired is a common side effect with this drug. Mind you I have been helping daughter & husband move house and clearing my own house to accommodate them and all their belongings!! )

Re: Brief Update
 

I'm sorry you are not tolerating this treatment very well. Rest and rejuvenate and hopefully, you will adjust to the treatment soon.

Re: Brief Update
 

Tiffany,
I'm sorry your having a rough patch but Know you can come through this stronger than ever!
I'm keeping you in my prayers
And
Thoughts!

Re: Brief Update
 

Sad to report that Tiffany has passed away July 17th. Condolences to her family and friends who will miss her dearly.