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Newly diagnosed

Posted by lisamariev @lisamariev, 1 day ago

Hi there, I've been recently diagnosed almost a month ago with Invasive Ductal Carcinoma, HER2+. Two weeks later, IBC was confirmed. I started adriamycin and cyclophosphamide on Thursday. What are people's experiences with these diagnosed?
Thank you 😊

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katgob | @katgob | 1 day ago

I was diagnosed in July of2021 with IDC and only found out i had Her2+ in my tumor at surgery. I also found out i had Brca2, and since I am at City of Hope, they believe in the genetics of cancer, so I was given 12 rounds of Taxol/Carboplatin every week for 12 weeks. Something i did to walk through each week, was to put on a stretchy bracelet every week till week 6, I then took one off for every week until there were none. I was supposed to have Adriamycin every three weeks after my 12 rounds, but i only made it one round. I was hospitalized for next to zero white, red, and platelets. I was instead given a pill called an Olaparib. My first one caused the same with my blood. They scheduled me for surgery. Scans showed my tumor shrunk 1/2 with chemo. It was 5 cm. Surgery in Feb then in April I started Lynparza. A cousin they said i took in December. Less of a dosage too so I would have less problems with my blood.
All in all, your stage adds to what treatment you will have and the tumor size. I want you to know that when you get your chemo infusions ask the nurse assisting you to answer a few questions. In my 3rd week I lost my hair, but i had it cut short then to three inches around so i did not have clumps fall out.
In that week my infusion nurse said usually the 2nd day after the chemo infusion you may feel nausea. She said the day after you get home start one Zofran then one Compazine every 5 hours. You will not have nausea at all. I did have constipation, so take a laxative as you take nausea pills. Keep those bowels moving.
Above all else i took it at one day at a time. I woke up and ask myself how i felt. I drank only water, which for me was crystal geyser. I drank and drink half my bodyweight. I did not find May Clinic till I was diagnosed with MDS. I had been on breastcancer.org.
This board has been my lifeline though a transplant. Keep posting, as the people will share and that is helpful and so heartwarming to hear you are not alone and share a similar journey with many others.

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1 reply
Mentor
Chris, Volunteer Mentor | @auntieoakley | 23 hours ago

Hello @lisamariev I am sorry to hear you are needing these treatments. I took them with taxol many years ago. My oncology nurse said the one that caused all the troubles was the Adriamycin. I know they have a lot better ways to help deal with side effects these days. You said you are her2+, I am sure your doctor explained this is a “druggable” target.
The hardest part of my time on these drugs was the nausea. Take the meds they give you for that, it is easier to keep it under control, than to get it under control when it is bad, if that makes sense.
Can you tell me more about your journey so far. Did you have surgery yet? Has your tumor been staged? How are you feeling after your first treatment?💕

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1 reply
lisamariev | @lisamariev | 9 hours ago
In reply to @auntieoakley "Hello @lisamariev I am sorry to hear you are needing these treatments. I took them with..." + (show)
@auntieoakley

Hello @lisamariev I am sorry to hear you are needing these treatments. I took them with taxol many years ago. My oncology nurse said the one that caused all the troubles was the Adriamycin. I know they have a lot better ways to help deal with side effects these days. You said you are her2+, I am sure your doctor explained this is a “druggable” target.
The hardest part of my time on these drugs was the nausea. Take the meds they give you for that, it is easier to keep it under control, than to get it under control when it is bad, if that makes sense.
Can you tell me more about your journey so far. Did you have surgery yet? Has your tumor been staged? How are you feeling after your first treatment?💕

Jump to this post

Hi! Thank you for responding! The journey so far, has been fast and furious. I was diagnosed with IDC Her2+ on April 8th; two weeks later, it was upgraded to IBC. Surgery will be quite awhile away, as I understand. I already started the first treatment on Thursday (adriamycin
and cyclophosphamide), and will continue every 3 weeks for total of 4 treatments. July 24th will be when I start the second round (herceptin and taxol), which will be weekly. Hopefully surgery right after, if the treatments are successfully in minimizing the tumour. I have yet to get a PET scan (May 13th), and a genetic blood work marker test has been scheduled for that day also. It hasn't been staged as of yet.. maybe after PET? Good thing is, it's not in the bones!
My mental health has been really good; I'm a very positive person! I would love to hear more of your story as well!!

REPLY
lisamariev | @lisamariev | 9 hours ago
In reply to @katgob "I was diagnosed in July of2021 with IDC and only found out i had Her2+ in..." + (show)
@katgob

I was diagnosed in July of2021 with IDC and only found out i had Her2+ in my tumor at surgery. I also found out i had Brca2, and since I am at City of Hope, they believe in the genetics of cancer, so I was given 12 rounds of Taxol/Carboplatin every week for 12 weeks. Something i did to walk through each week, was to put on a stretchy bracelet every week till week 6, I then took one off for every week until there were none. I was supposed to have Adriamycin every three weeks after my 12 rounds, but i only made it one round. I was hospitalized for next to zero white, red, and platelets. I was instead given a pill called an Olaparib. My first one caused the same with my blood. They scheduled me for surgery. Scans showed my tumor shrunk 1/2 with chemo. It was 5 cm. Surgery in Feb then in April I started Lynparza. A cousin they said i took in December. Less of a dosage too so I would have less problems with my blood.
All in all, your stage adds to what treatment you will have and the tumor size. I want you to know that when you get your chemo infusions ask the nurse assisting you to answer a few questions. In my 3rd week I lost my hair, but i had it cut short then to three inches around so i did not have clumps fall out.
In that week my infusion nurse said usually the 2nd day after the chemo infusion you may feel nausea. She said the day after you get home start one Zofran then one Compazine every 5 hours. You will not have nausea at all. I did have constipation, so take a laxative as you take nausea pills. Keep those bowels moving.
Above all else i took it at one day at a time. I woke up and ask myself how i felt. I drank only water, which for me was crystal geyser. I drank and drink half my bodyweight. I did not find May Clinic till I was diagnosed with MDS. I had been on breastcancer.org.
This board has been my lifeline though a transplant. Keep posting, as the people will share and that is helpful and so heartwarming to hear you are not alone and share a similar journey with many others.

Jump to this post

Awww thank you for sharing your journey! You are a strong, amazing, and inspirational person... I'm sorry you had to struggle so much during your treatments, being hospitalized due to your counts! My mom passed away from pancreatic cancer in February. In Jan of last year, she was hospitalized after her first chemo treatment, due to her blood counts, and potassium levels plummetting; we almost lost her then.. I think that's one of the things that scares me-- getting that close to death in only the first or any treatments.. this is definitely not something anyone expects to happen to them... I sure thought I was invincible...thank you for your words and encouragement! I offer that right back at you!! 🙂

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