In Praise of Perjeta

[Mtngrl]

I started on Perjeta about 13 months ago, and I have not had any new lesions in that time. My personal definition of "stable" is "no new lesions." So I'm pleased.

It does cause diarrhea, which can be challenging and difficult to manage. But otherwise it has been quite tolerable.

[jaykay]

yea, Amy! Great news

[caya]

Great to hear Amy - I guess diarrhea is better than the alternative!

all the best
caya

[Mtngrl]

I posted because I've seen a few members whose doctors express skepticism about Perjeta because it's so "new." It's not just me, the CLEOPATRA trial showed extremely positive results for it.

[Kathy T]

Amy, I've been receiving Perjeta and Heceptin alone for the past 14 months and have remained stable. 12 years at stage 4 for me! I am so grateful.
Kathy

[linzer]

Yay! I only had 4 rounds of Perjeta along with Herceptin and Taxol. I had a complete response - yipee! I agree about the diarrhea being challenging. I did find that the L-glutamine I took to prevent taxol neuropathy actually helped a bit with managing the diarrhea too. So glad to hear that Perjeta has had such great benefit for so many of us!

Linda

[KDR]

Linzer,
Did you take L-glutathione for neuropathy? I wish I'd known about it when I started chemo. I'm taking it now to UNDO damage. Fiver years later.
I have been on and off Perjeta since 2011. I think it's a great drug.
Amy,
Wonderful news you have for us. And soon, I believe, we will ALL have the best news yet: either a vaccine, immunotherapy, et al, to CURE us.

Karen
Who Still Believes In The Cure

[linzer]

KDR, First off, I love your avatar! I was a huge IDOJ fan when I was a kid :)

I did take L-glutamine while on taxol. I used a high dose and took it religiously each day. I had minor, transient neuropathy but it did not last. I'm 7 months out from last taxol and I have no signs of neuropathy. I'm so sorry that you have deal with it.

I used the Pure Encapsulations brand. My "research" showed that some brands don't include much glutamine and it's not regulated. You can buy the Pure brand on Amazon.

Good luck!

Linda

[MaineRottweilers]

Wonderful news! I'm glad to hear that it working so well for so many.

[annettchen]

Hi Amy,

I also heard about the very positive outcome from the Cleopatra trial - in particular, my chemo nurse (I'm currently on Herceptin / Perjeta maintenance every 3 weeks) told me that they had very, very positive results for the Herceptin + Perjeta combo for women that get this as first line... Will ask her again on Wedensday mybe she can give me more details.

For the "D" - I have heard that that can be the case, and so sorry that it is for you - must be tough. I have been on it for over a year now, and I guess I'm just lucky, but wanted to let others know that while it's quite often the case, it does not always have to be - I do not have diarrhea on Perjeta so far!

[leldredge1]

Great news!

[CoolBreeze]

Great drug. I've been on it two years. No bowel issues either, and I've read the magic sentence "no evidence of recurrent metastatic disease." I know it saved my life.

Glad it's helping you although I am sorry about the side effect. I hope it's managable.

[Rosalie]

Amy, such good news for you :) And thanks for sharing. I have bone and liver mets and I'm also on Herceptin and Perjerta as first line treatment. It's great to hear a positive story

[Heathcliff4]

Congratulations!! It's an amazing combination. I had 4 rounds of Perjeta with Herceptin and may be the only person on this board who had it in the adjuvant setting for stage 2 disease. Long story, but I was able to convince the docs at UCSF to approve it in my case due to a cancerous lymph node missed in surgery at a different hospital. The node would allow them to "study" the effects of the drugs and placed me in between neoadjuvant ands adjuvant. Pet scan at the end of chemo/P and H and no evidence of disease.

[Dakini52]

How much L-Glutathione did you ladies take?

[Dakini52]

Is anyone who is on the Herceptin/Perjeta combo having issues with nausea? I had my first treatment about a week and a half ago and had pretty severe nausea for several days. I am hoping that it was either as a result of the loading dose or that I may have just picked up a virus around the same time and this is not a side effect for me long term.

[TiffanyS]

I’m glad to hear such positive results from Perjeta. I was supposed to start TDM-1 yesterday, as my breast cancer has spread to my lungs, after having surgery, chemo (Carboplatin and Docetaxal) and radiation, however, my oncologist wants me to take Perjeta first, because if it doesn’t work, I can still take the TDM-1 at a later day, however, if I take the TDM-1 first, and it doesn’t work, I cannot take the Perjeta later. So, I will now be taking Perjeta with my Herceptin every three weeks for an indefinite amount of time, along with Taxol for 8 to 16 treatments. The good news is, I will be given a very minimal amount of the Taxol, so I will have very little, if any, side-effects. The bad news is, my hair might thin out, just as it was getting long enough to not have to wear a wig anymore! Oh well, as long as it works, that’s all I care about. My oncologist advised that the Perjeta is a very effective drug that will attack all of the cancer cells in my body, and that she’s seen good results with this drug in the past, so let’s hope it works for me. She also advised that I shouldn’t experience any side-effects from this drug.
My oncologist also advised that she’s going to a conference in Copenhagen in a few weeks, and she’s going to discuss my case with other oncologists, and see if she can find a clinical study for me. One study she mentioned is the Hermione trial, however, she’s going to see if there are any new ones. I asked her about immunotherapy, which helped former president Jimmy Carter which his advanced Melanoma, but she advised that there is no immunotherapy for HER 2 Positive patients yet. In the meantime, I’m just hoping the Perjeta works, as my first round of chemo didn’t!

[phil]

so glad it is working for you. i caution all stage iv her2 's who have progressed on previous tx. , get scanned , markers regularly. including pet ct or boone scan annually . perjeta and herceptin are genetic , not chemo. some of our stage iv sisters on perj/herc alone had it come back , in bones , brain . after 2 yrs . i dont mean to be a downer - just proactive. hopefully there are perjeta super responders out there . ( u know, the " C " word ) hope u are one . God Bless, Heal!

[Kim in CA]

Good advice Phil!

I had pretty much stopped having PET scans because of all the radiation over the years, and just relied on tumor markers which had always been so accurate for me.

Big mistake! My recurrence last Dec. was not picked up by my tumor markers, and the estrogen receptor status had changed as well. Still learning as I go into my 20th year with this disease!

However, I did get over 2 years on just Herceptin and Perjeta.

[TiffanyS]

Hi Kim,

As a newbie, it’s very hopeful to someone like me to know that there are people like you, who are still alive 20 years after diagnosis. I’m also glad to know that the Herceptin and Perjeta worked for you for two years. I hope it works for me for a long time, but if even if it only works for two years, like it did for you, I know that a lot can happen in two years. Right now my back-up drug is TDM-1, however, new, more advanced treatment, may come out in the next few years. For now, I’ll take all of the time I can get!

My oncologist told me that for now, I will be going for updated scans approximately every three months. That could change though depending on how successful the treatment is. Even if the treatment does work well for me, I will definitely push for frequent scans.

[Kkmom]

Amy,
Yes - great news - and thanks for sharing. Wonderful news, even with the diarrhea. :(

[TiffanyS]

Does anyone know on average how long Perjeta seems to work for people? My nurse practitioner told me the other day that they have a patient who’s had over 100 treatments, and is still in remission. If this person is getting treatments every three weeks, that means he/she has been taking Perjeta for around 5 years. This seems very promising to me, and I’m hoping that it will put me in remission for that long as well. That being said, I know that medication works differently with everyone, and I’m wondering what the “average” is in regards to how long this medication works.

[TiffanyS]

While I was moisturizing the area where I had radiation over the weakened, I noticed that one of the red marks, where one of the small masses is located, is smaller. At first I thought this was just wishful thinking, but I looked at it a few times, and I’m pretty sure it’s smaller now than it was a few days ago. I don’t want to get my hopes up, but I’m wondering if this could be an indication that the Perjeta is working, and that that masses are shrinking? Could there be another reason for this?

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
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.
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 ultrasound and bone scan 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 on, one off 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 cancerous, 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 – CT Scan scheduled for November 22. I can’t wait to find out if the Perjeta is working!

[TiffanyS]

I went to the hospital yesterday for treatment, and I got some good news! I noticed on the weekend that one of the red marks on my scar, where one of the masses is located, was getting smaller. I pointed this out to the Fellow I met at the hospital today, and he gave me a physical exam. He told me that he could no longer feel any of the masses along my scar, and that he thinks that they are gone. This means that the Perjeta is working!

I have also been experiencing chest congestion on and off for about five weeks now, and I developed a bit of a cough last Monday. The doctor told me that the congestion is probably caused by the cancer in the lymph nodes in my chest. He said that lymph nodes are harder to treat, and that it will take longer for the medication to treat this area. That being said, since the Perjeta seems to be working in regard to the masses on my scar, there's no reason it won't eventually work in regard to the lymph nodes. I guess we will just have to wait and see.

I also got clarification as to when I will be able to stop taking Taxol. When I first started treatment, I was told that I would need between eight and 16 doses of Taxol. As I'm getting Taxol two weeks in a row, with a week off, and then two weeks in a row, I was counting every chemo treatment as a dose. Apparently, I was wrong, and the two doses of taxol I get in a row are considered one treatment. This means that even though I've had five doses of Taxol to date, I'm only considered to have had three treatments. This means I won't be done with Taxol until mid-January. The good news is, I will probably only need six doses of Taxol, and not eight to 16 as originally suggested. I will also get a break from Taxol during the holidays as the clinic is closed from Dec 24 until the new year. My chemo side effects are still minimal, however, I am starting to experience more side-effects. I have been getting shortness of breath on and off over the last two weeks, and I have to slow down when I am walking or else I can't breathe. I have also developed neuropathy in my hands and feet again, although it is worse in my feet. My doctor recommended acupuncture, and I have an appointment next week. Hopefully it helps. I also noticed over the weekend that my hair is falling out again. So far, I haven't lost a lot of hair, and I'm trying not to touch it or wash it often, in an attempt to keep it. My doctor said I shouldn't lose it all, and that it should only thin out. I hope that she is right.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
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.
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 ultrasound and bone scan 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 on, one off 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 cancerous, 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 – CT Scan scheduled for November 22. I can’t wait to find out if the Perjeta is working!

[konagirl]

I had 6 rounds of chemotherapy (18 weeks) on the TCHP regimen (the rounds were TCHP, TC, TC). My doctor told me that Perjeta boosts the effectiveness of Herceptin. It started reducing the tumor within 3 weeks. I had both d and constipation and severe heartburn. I was on Dexamethasone steroid. Ondansetron & Prochlorperazine prevented severe nausea, I was instructed to start taking around the clock after my infusion because once you start throwing up its hard to stop. Great advice, had a few close calls and dry heaves but never threw up during chemo. Imodium helped with d and my doctor told me to take Omeprazole for the heartburn, the 14 day treatment but to continue if I needed it. That did the trick. After the 6 rounds of chemo I had a lumpectomy and radiation every day for six weeks. I also continued with Herceptin for a full year, every three weeks. I didn't have any side effects from the Herceptin. All good so far.

[TiffanyS]

I went for my fourth full treatment yesterday, and my seventh dose of chemo. It was another long day, and I was there from 7:45 until 4:10. I actually complained about my wait a few times, as my drugs were brought to the client at 11:30, however, as the nurse assigned to me was going to lunch at noon, she didn’t have time to get me set up before her lunch, and told me that the nurse covering for her would do it shortly. When I went into the clinic to follow up, I was told that the nurse covering for my nurse was busy, and would get to me shortly. Well, she didn’t get to me until 1:30! I have to tell you, I find this to be unacceptable, especially considering that I was the first person at the clinic that morning, and people who arrived after me were set up before me. What can you do though!

The good news is, my oncologist gave me another physical exam today, and she was very happy with the results. She cannot feel anything along my scar line anymore, and she thinks the tumours are gone. Also, the lingering cough that I have had for weeks is also almost gone, which she say is a good sign. She’s very confident that the Perjeta is working, and I can’t wait for my CT scan on December 14 in order to find out for sure! Given this, we are fairly confident that I will be able to take a four week break from chemo over the holidays!

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
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 L 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!

[MaineRottweilers]

Chemo break!!!

[TiffanyS]

I can’t wait! I desperately need a break from chemo!

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
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 L 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!

[konagirl]

Dear Tiffany, I'm so sorry that the Oncology nurses didn't provide you with the care you deserved. I'm sure they are nice but it's their job to get you hooked up in a timely manner since this does take awhile. You shouldn't have had to wait that long. You might want to speak with your Oncologist about this so they can at least schedule you properly. My infusion was at my Oncologists office (they also treated others who were sent there for infusions). I never had to wait more than a half hour and only because the room was full (about 8 people) and they were busy getting everyone hooked up. They even called a couple of times to switch a date (if it was okay with me) because they were swamped with appointments. I was lucky that I received the best care from all of my providers and their support staff, you should receive no less.

[TiffanyS]

My appointment was at 8:15 am, and I was there at 7:45 am. The way it works at my clinic, is you show up at your appointment time, check in, and then get a number to get blood work done. Once the blood work is done, I am given a buzzer, and wait to be called into the nurses office to get weighed in and tell them about side-effects and any other concerns. After that, I have to wait an hour for my blood work to come back, and then I get to see the doctor or nurse practitioner. Once that is done, they order my medication, and I have to wait about an hour to an hour and a half for the pharmacist to mix it and deliver it to the clinic. By the time this is all done, it’s usually between 11:00 am and noon. Once it’s delivered to the clinic, the nurse assigned to me is supposed to call me in and set me up, however, the nurse assigned to me yesterday didn’t have time to do so before her lunch break, and the nurse covering for her was too busy with her patients to deal with me. This is an ongoing issue at my clinic, and I have complained to my oncologist as well as my social worker, and they say that there’s nothing we can do. This is just the way it is. It’s frustrating to have to spend all day at the client, when it only takes two hours to administer my drugs! Once I’m done with chemo, and I’m only getting Herceptin and Perjeta, I plan on working in the morning, and showing up at the clinic at noon. This way, I’m not spending all day at the clinic just to get these two drugs administered.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
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 L 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!

[konagirl]

They always had me do bloodwork a few days before my chemo so they had it that morning. Every doctors office is different.

[TiffanyS]

I could get my blood work done the day before, but I work full time, and I don’t want to have to take a morning off of work to go to the hospital to get my blood work done, only to have to go back the next day for treatment. I’d rather get it all done in one day.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
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!

[Juls]

Hi
I am the same - all done on 1 day.
I go to hospital for about 9.30/9.45. Don't go earlier because journey at rush hour would take 2 hours instead of 1. if I lived nearer the hospital I would have to go on the Wednesday for blood test & back Thursday for treatment. When I started at this hospital Nurse was a bit off - she thought it was too big a commitment to travel & that I would give up! Really!! Been doing this for nearly 4 years now! Never missed an appt.

I do have to hang about in the morning - sometimes up to 2 hours. I go back in the afternoon for results and treatments. Sometimes I think they keep me waiting as I've been doing this so long & I'm fine.
Many times I've still been at the hospital at 6pm & sent up to the ward to finish treatment. Latest out has been about 7pm.
It makes for a long day. & a costly one - we go for brunch, coffees etc & make it a day out! Anything to pass the time!
Juls

[TiffanyS]

I went to the hospital for chemo yesterday, and my nurse practitioner told me that I will not be getting chemo on Dec 20 or 27th, which will give me a four week break from chemo over the holidays! I was so happy to hear this, as it means I can enjoy Christmas without have to deal with side-effects or worrying about my white blood count. I actually get to play with my nieces and nephew this visit, and not just talk to them at a distance (they are always sick with a cold, so I normally need to avoid them when I visit). I asked her if I would have to make up these two chemo treatments in January, and she said “we’ll see”. If the results of my CT scan are good, I may not. So, as of now, I have four more chemo treatments schedules for January, maybe six, and then I proceed with just Herceptin and Perjeta every three weeks. I can’t wait to be done with chemo!

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
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!

[MaineRottweilers]

That's fabulous news! I so remember how rewarded I felt when they told me I could have a break and then when we agreed that that was enough chemo. Celebrate!

[TiffanyS]

Thanks! I do plan on celebrating, and by January 10, I’ll be ready for chemo again. I don’t mind getting another four to six doses, if it means the cancer will go away and not come back, and having a four week break will make getting chemo again that much easier. Right now, I’m a little scared that once I stop the chemo, the cancer will come back, and that the Herceptin and Perjeta will not keep it from coming back on its own. I was talking to a women at the clinic yesterday, and she’s been taking Perjeta and Herceptin for a year, and her second last CT scan showed something on her lungs. She was supposed to get the results of her last CT scan yesterday, but they didn’t have them yet. If it’s grown, it means the Perjeta is no longer working for her, and she’ll have to try TDM1. The fact that her cancer has come back only after a year of being on Herceptin and Perjeta makes me a little worried. I hope it works longer than that for me.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
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!

[conomyself]

I have been stable on Herceptin and Perjeta alone for 4 years. I also use medical cannabis, so maybe that is helping but there is no way for me to be certain.

I used to have chronic diarrhea also but I found a way to resolve it. I was not a believer in the "alkaline diet" or whatever but then after a series of events I was led to try 9.5 pH water. For two days I peed and peed. I lost about 8 lbs water weight and my "cankles" (ankle bags) disappeared within those two days. The chronic diarrhea disappeared and never returned, as I have stayed on this 9.5+ pH water faithfully ever since...

[TiffanyS]

I’m glad to hear that you’ve been stable on Herceptin and Perjeta alone for four years. I too have been getting bad diarrhea from the Perjeta, and the medication the doctor has given me to prevent it doesn’t help for long. The good news is, it only seems to last for a week and a half after receiving the Perjeta, and then everything goes back to normal.

I have some bad news though. I think my cancer has come back, which means the Herceptin and Perjeta are not working without the Taxol. I noticed on Christmas night, while watching TV, that a new “pimple” has grown beside the red mark where one of my old tumors was located. It hasn’t gotten any bigger since then, but it hasn’t gotten smaller either. Also, I feel something under the skin beside the pimple. It’s hard to tell what it is though, as the area is caved in a little due to radiation. That being said, I’m pretty sure it’s a re-growth, as what are the chances of a pimple showing up in that area. What scares me is how fast the cancer has grown back. My doctor told me that my cancer was aggressive, but to grow this fast is astonishing. My last chemo was on December 6, and my CT scan, which was on December 12, showed that the small masses along my scar line were no longer visible. That means that this cancer has grown back in less than two weeks! My next treatment isn’t until next Tuesday, and I can’t wait to show this pimple to my doctor to see what she says, and to get chemo again! Right now, I’m regretting my chemo break over the holidays, as it may be the reason my cancer is back! As you can imagine, I’ve been having anxiety attacks on and off over the last couple of weeks, and I can’t wait for this week to be over so I can get treatment again!

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
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, 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 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 shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking. Also, the small masses along my scar line are no longer visible. This means the medication is working!

[Unclaimed]

Hello. Is anyone still taking Perjeta and are you still happy with it? I was Stage 4 when diagnosed, and just started treatment Feb 2 with oral Chemo, Capecitabine. I had one Herceptin IV the end of Feb and one in March. Onc want to add Perjeta to my next IV. I'm worried about side effects, neuropathy and hair loss particularly if Perjeta is added. I would love to hear from anyone still taking it what effect, positive and negative, you have had. Thank you 💜

[Juls]

Hi
I was on H & P for 3 years. Perjeta was a trial drug in UK at that time. Unfortunately bone met found & treatment was changed to Herceptin and Capecitabine.
Two ladies are still on original trial of H & P (over 5 years later) and have had no progression. Upset stomachs & itching seem to be the side effects they mention. I had upset stomach but no itching. Also had no hair loss.
Hope this helps.
Regards
Juls

[Unclaimed]

Hi Julie
Thank you so much for responding! I'm sorry to hear about the bone Mets. I have that as well and also take Capecitabine for it. I'm relieved to hear people are doing well on Perjeta even after many years. I'm so new to treatment, only 2 Herceptin infusions, and my 4th round of Capecitabine, and am so afraid of the effects the treatments are going to have on my body. I'm really afraid to add Perjeta, but in a way, afraid not to as well. Thank you again for sharing your experience on Perjeta with me. 💜

[Juls]

Hi Unclaimed

I have been in treatment for over 5 years now!
Currently on Kadcyla. Had a few treatment breaks recently because bilirubin too high (a side effect of Kadcyla) but other than that I feel well.
I think it's worth trying Perjeta.

How are you finding Capecitabine?

Juls

[Unclaimed]

Hello, sorry my phone changed your name last time, Juls!
I'm happy with Capecitabine. I wasn't willing to do IV Chemo, and had no idea there were pills as an option. I thought I was get a diagnosis and just die because there wasn't anything else. The normal regimine is 1250 mg twice a day for 14 days, but I take 2000 mg twice a day for 7 days. There is a 7 day break in between. The shorter time works well for me, even though it's a higher dose. I haven't had any stomach problems. I use coconut oil and Lubriderm lotion on my hands and feet many times a day, and haven't had any peeling skin. The first week I took it I did get mouth sores, but now I brush my teeth and rinse with baking soda and warm water within 30 minutes of eating, and I haven't gotten anymore. I do the mouth and skin care even on the off weeks. I'm really thankful for Capecitabine. Are you doing well on it?

[Juls]

Hi

I was on Cap for a year. Initially 1750 twice a day for 14 days with 7 off. About 5-6 months in bilirubin went up ( a known side effect at 5-6 months of treatment) so dose reduced. A few months later dose reduced again (for heartburn). Think it went down to 1250mg. Skin ok - used udderly cream occasionally. Again pretty easy to do as long as you take with food! Now on Kadcyla since last March.
Juls

PS - Phone was correct. My name is Julie!! lol

[Unclaimed]

Well hello Julie, I'm Ana. I had to Google bilirubin, I'd never heard that before. Google says caffeine lowers bilirubin so that's my cue to indulge my coffee addiction 😄☕☕ All these medications are so powerful with horrible side effects. I've been a healthy active person, and always used simple natural remedies combined with healthy diet and significant level of exercise. I'm not doing "sick" very well at all. It seems a longer lifespan comes with debilitating side effects, and it's hard to figure out how to manage it all. I want to look good and feel good, I don't just want to be alive, I want to live. I'm hoping the Perjeta will allow me to do both. Thank you again. Have a restful night 🌛

[Juls]

Hi Anna
Just reading your reply - haven't logged on for a few days.
Hope you are ok.
Like you I was rarely ill, had good diet & active. Not into exercise though ( My Daughter & her Husband are Personal Trainers & have a gym so don't really have an excuse!)
It's been over 5 years now since diagnosis in Feb 2013 - Med team thought I was stage 3 & didn't do further tests for 3 months. When scans done had tiny liver met so stage 4 from May 13.
I have felt pretty good through all treatment & do exactly what I did before diagnosis except go out to work! It does take time to get your head round it.

I also read that bilirubin reduces with caffeine so that's my excuse for drinking coffee as well. Got to have my coffee!!

Take care
Julie