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It has been a while since I have visited this site, but I wanted all of my sisters to know that as of today, I am 8 years NED. I count from the day of my surgery, since despite having 10 positive nodes, my scans were negative, so once the surgery was completed -- no detectable cancer left in me. I consider myself a CONQUEROR, not a survivor, because, despite the negative scans, with 10 nodes, I wasn't taking any chances, so I waged war: a double MX, AC, Taxol, radiation and Herceptin. I tried tykerb,(in the ALTTO study) but it was toxic for me and I was taken off after 6 weeks and given a full year of herceptin. I also participated in a vaccine trial. Last year, I had DEIP flap reconstruction, and I am very happy with that decision. I have walked in the 3-day once, and the Avon walk four times, and have signed up to do this again this year. I have mild lymphedema, and permanent moderate neuropathy in my hands and feet from taxol. I tried several treatments for the neuropathy, but nothing really helped; then I "accepted" the new normal and just got on with life. Since finishing treatment, I have retired, travelled the world, lost 70 pounds, taken up ballroom dancing, do volunteer work and I LIVE every day!!! I actually have a better life than before my diagnosis! So to all who are battling -- fight the fight! It can be hard - but you can get through it. When I received my path report, I did not think I'd see this day, yet here I am. Be encouraged. Be patient. Be positive. Persevere.

Estelle,

I loved reading your post. Congratulations!! It certainly sounds like you are living life to the fullest. It is funny how having cancer can have such a positive impact on ones life. Every day is a gift to be cherished and enjoyed.

Wishing you many more years of living life to the fullest!

Take Care,
Brenda

Thank you for checking in, Estelle! It's wonderful for others to see stories like yours.

All the best,
Amy

Estelle,

Many congratulations and wishing you many more happy years.

Janie

thanks for your posting..

Estelle,
Thanks so much for your post - you give us all courage and hope. Even though I am only 4 years out, I feel like I am always looking over my shoulder. Many congratulations - Pam

Hi Estelle, so glad to see you, and a big congratulations on your
Huge milestone. I am so happy for you.
you and I share the same stage and almost identical treatment, alittle ahead of you; almost 12 yrs.
I find my life so more enriched as well
My mantra is live large and be grateful every day!
Enjoy!

congratulations Estelle.

Hi Estelle my name is also Estelle. I am just starting the recovery road. Completed 6 rounds of chemo. Preparing for surgery next month. Opted for double mastectomy. I too have peripheral neuropathy in my hands wasvhopin that would subside. Your story was very inspirational for me and you have a great name! I am doing the Avon 39 walk in Setember!

Great story and post Estelle! Congratulations!

Congrats Estelle! May you have many more NED years!

all the best
caya

Hi Estelle -- eefreeman99! Its really unusual to meet someone with our name! I wish you all the best! Walking the Avon is a good way to stay motivated, and when needed, distracted. You will meet many warriors and really feel empowered by so many strong women! My walk is in May - started training last week. I will check back from time to time to see how you are doing. Re neuropathy -- don't know where you are located but there are several clinical trials. I wasn't successful but some seem to work better when done closer in time to when the nerves were damaged. My first treatments were some years after I finished taxol. If you go to clinical trial.gov, and put in CIPN (chemotherapy induced peripheral neuropathy), you will get a list of trials and you may find something that works for you. Good luck!Hi Estelle -- Its really unusual to meet someone with my name! I wish you all the best! Walking the Avon is a good way to stay motivated, and when needed, distracted. You will meet many warriors and really feel empowered by so many strong women! My walk is in May - started training last week. I will check back from time to time to see how you are doing. Re neuropathy -- don't know where you are located but there are several clinical trials. I wasn't successful but some seem to work better when done closer in time to when the nerves were damaged. My first treatments were some years after I finished taxol. If you go to clinical trial.gov, and put in CIPN (chemotherapy induced peripheral neuropathy), you will get a list of trials and you may find something that works for you. Good luck!

Many congrats Estelle!!

Thanks for the encouragement. I will look into that study. I was named after my Grandmother, Estella.

It’s great to hear your story Estelle, and it sounds like you are living life to the fullest! Good for you! I too am trying to live life to the fullest, however, I am still limited in regard to what I can do as I’m still going through treatment. I’ve planned two trips to Europe for next year though, and bought tickets to two concerts this spring and summer, and am going to the theater next month and am trying to do all of the things I love. Hearing your story is an inspiration!

In regard to the neuropathy, my doctor recommend acupuncture, and it helped me. I’m not doing it right now, as I’m back on chemo, but, once I’m done with chemo, I’m going to try it again. If you haven’t tried acupuncture yet, give it a shot. It may help.

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12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
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, 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 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
03/17 – Second brain MRI scheduled

Thanks I have been considering acupuncture. I will definitely give that a try. Good for you booking your trips and concerts. Sounds like it's been a rough toad for you.

I hope the acupuncture works for you, as it doesn’t work for everyone.

Yes, it’s been a rough year and a half, but I’m getting through it. I’m lucky that I don’t have really bad chemo side-effects, so that I can still work and go out and about. I do get bad neuropathy in my feet, foot spasms and shortness of breath, but otherwise, I’m doing okay. My two trips are actually booked for this year, not next year, and I’m leaving for my first one at the end of April. I can’t wait as I had to cancel last year’s trip due to my recurrence. Last year was the first time in about 10 years that I haven’t gone anywhere, and I’m looking forward to traveling 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 post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
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, 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 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
03/17 – Second brain MRI scheduled