What It’s Like Rising A Little Boy With Advanced Breast Cancer – Oprah Mag
Posted: December 17, 2020 at 7:52 pm
Vichhika Taing with Autumn Love Photography
My goal in life is to see my two boys, who are now 5 and 7, graduate from high school. That might not seem like a lot, but at one point I wasnt even sure if I would see them start kindergarten.
Around four years ago, when I was 38 and the kids were about 1 and 3, I noticed I was walking with a limp and had a lot of back pain. But I dont like to complain, so I just kept going. Then one day, I was tandem breastfeeding my boys and I felt a lump in my breast. I wasnt that surprised, because I had an overabundance of milk and had experienced lots of clogs in my milk ducts. I asked my lactation consultant about it, and she sent me to see my primary care doctor.
My primary care doctor wasnt overly concerned, but because my mother was then a 13-year breast cancer survivor, I had a mammogram just to be safe. Having a mammogram while youre breastfeeding is crazyit was so painful, and I showered the machine with milk! They also did a diagnostic ultrasound that day, and then referred me for a biopsy. I had a hunch something might not be right, but I didn't let myself go into full on panic mode yet.
I was one bad step away from that bone shattering, and had to have surgery right away.
It was March 8, 2017 when I found out I had breast cancer, and after that it was like boom, boom, boom, things happened so fast. I had a lumpectomy and started chemo, and then a whirlwind of scans and appointments. I was soon told I had Stage IV metastatic breast cancer that had already spread through my blood to my bones. The reason I was limping was that there was a 5 cm tumor in the middle of my right femurI was one bad step away from that bone shattering, and had to have surgery right away to place titanium rods into both of my thighbones.
I haven't had enough time with my kids! That was my very first thought when the doctor told me the median life expectancy for metastatic breast cancer is 2 to 3 years. They were so young that I was legitimately concerned that they wouldnt even remember me. All I wanted was more time to spend with them.
When I first was diagnosed, my breast surgeon did genetic testing for the BRCA 1 and 2 gene mutations, both of which substantially raise your risk of breast cancer. Those were negative. But once we realized how advanced my cancer was, I had the full genetic panel done. In 2017, there were 40 genes known to be associated with breast cancer. And it came up that I was positive for a mutation in the ATM gene, which not only increases the risk for breast cancer and pancreatic cancer in women, but also prostate cancer in men. Of course, I let everyone in my family know what my genetic testing found, and a lot of relatives have now tested for ATM. Several are positive, and a sister and cousin of mine had prophylactic (preventative) double mastectomies, which dramatically reduces their risk of breast cancer. Genetic testing really had a huge effect on my entire family.
Abigail Johnston
The genetic testing also identified four somatic mutation (those caused randomly or due to environmental factors, not genetics), including PIK3CA. I was elated to learn that PIK3CA has an actionable treatment right now, but Im glad that I know about the other ones, despite the lack of treatment options. It means I can watch for new medications that might help down the line. Luckily, there is lots of research in the works.
My oncologist told me it was the closest I had come to being at No Evidence of Active Disease (NEAD).
In August 2019, after two years on the first drug, a PET scan showed that my cancer had mutated and the drug I was using was no longer effective. Since I had already gotten tested for PIK3CA, I was able to start a brand-new drug that was targeted to that mutation right away. But after several months on that second drug, another scan showed that the cancer in my bones was becoming more metabolically active, so I added another drug to my regimen. There are a lot of side effects, but its worth it to keep my cancer in check.
My most recent PET scan showed that this combination of drugs is working. I am currently stablemy medical oncologist told me it was the closest I had come to being at No Evidence of Active Disease (NEAD). It was the best scan Ive had in three and a half years.
Cancer has definitely changed things. I was really active before my diagnosis, and my boys are very high-energy, but now we do a lot more sedentary things, like crafts and science projectsthey love anything thats really messy, like slime and paint. We live in Miami, so we also spend a lot of time in the pool, which is great, because theyre like little fish, and I do a lot of my physical therapy in the water. On days when Im not feeling well, we have a lot of cuddles and snuggles in bed.
Abigail Johnston
The hardest thing is that I cant move too quickly or grab my kids if they run out in the middle of the street, so we have a baby-sitter to help with that. And since having cancer is just all-around challenging, about three years ago, my family moved in with my parents, so my mom can help out, too. My husband, Elliot, has also been amazing. He is so patient, loyal, consistent, and kind.
Ive met the first big goal I set when I was diagnosed, which was to see both my boys enter kindergarten! Now we have 12 more years until my younger son graduates high school, and Im feeling hopeful that a medication targeted to my body and my cancer will get me there.
This content is created and maintained by a third party, and imported onto this page to help users provide their email addresses. You may be able to find more information about this and similar content at piano.io
Link:
What It's Like Rising A Little Boy With Advanced Breast Cancer - Oprah Mag
- After the Nobel, what next for Crispr gene-editing therapies? - The Guardian - February 25th, 2021
- Lucky winner! Rs 16 crore lottery gives new lease of life to 14-month-old Fatima - Zee Business - February 25th, 2021
- 14 Emerging Tech Trends for 2021and Dallas-Area Companies That Are Innovating for the Future Dallas Innovates - dallasinnovates.com - February 25th, 2021
- Gene Therapy - Cleveland Clinic - February 19th, 2021
- 14-month-old lottery winner with killer disease gets new life after expensive therapy in Bengaluru - India Today - February 17th, 2021
- 16 crore drug is the hope for SMA patients - The Hindu - February 14th, 2021
- The First Gene Based Project to be conducted in the Rio Grande Valley - Mega Doctor News - February 14th, 2021
- Spondyloarthritis: Types, symptoms, treatment, and more - Medical News Today - February 14th, 2021
- MSI-High and Colon Cancer: What It Means, Treatment Options, and More - Healthline - February 6th, 2021
- Targeted therapy for lung cancer: Side effects and more - Medical News Today - February 6th, 2021
- Baby can be saved from rare genetic disorder - but sister, 5, will die of it - Metro.co.uk - January 31st, 2021
- ALK Positive Lung Cancer: Life Expectancy, Survival, and More - Healthline - January 31st, 2021
- Dr. William Kelley inducted into IAOTPs Hall of Fame - PRUnderground - January 31st, 2021
- Last Call with Jenna Balestrini, the WPI grad treating cancer with cell therapy - Worcester Mag - January 14th, 2021
- Province gives family facing $2.8M drug bill a glimmer of hope - CBC.ca - January 14th, 2021
- New Combination Therapy Tested By Children's May Offer Hope For Leukemia Patients - WVXU - December 22nd, 2020
- This 6-year-old Iowa boy is losing his vision and hearing. But his family holds on to hope. - The Gazette - December 22nd, 2020
- What Is Gene Therapy? How Does It Work? | FDA - December 17th, 2020
- What is gene therapy? - The Star Online - December 17th, 2020
- EAPM Advancing gene therapy with Advanced Therapy Medicinal Products - EU Reporter - December 16th, 2020
- San Diego's Locanabio raises $100 million for treatments aimed at degenerative diseases - The San Diego Union-Tribune - December 16th, 2020
- Italy needs new restrictions to avoid third, devastating COVID-19 wave - PM to paper - EU Reporter - December 16th, 2020
- Yes, men can get breast cancer here are the symptoms to watch for - Insider - INSIDER - December 12th, 2020
- Mumbai: Baby with genetic disorder needs Rs 16 crore therapy to live - Mid-day - December 12th, 2020
- Gene Therapy Liberates Hemophilia B Patients from Requiring Regular Infusions of Clotting Factor - MedicalResearch.com - December 12th, 2020
- Vaccination in the Era of Covid - Touro College News - December 7th, 2020
- Genentech Announces New Data Reinforcing the Long-Term Benefit of Venclexta-Based Combination for People With Relapsed or Refractory Chronic... - December 7th, 2020
- Medicare and cystic fibrosis: Coverage, options, treatments, and costs - Medical News Today - December 7th, 2020
- The FDA has approved the first drug to treat the rapid-aging disease progeria - Science News - November 26th, 2020
- 'This is why I'm here': A Detroit Lions VP tries to save her daughter from rare disease - ESPN - November 24th, 2020
- Encouraging Clinical Data for Controlled IL-12 for the Treatment of Glioblastoma and DIPG - OncoZine - November 24th, 2020
- SwanBio Therapeutics Expands Board of Directors with Appointments of Proven Industry Leaders - Business Wire - November 24th, 2020
- SwanBio Therapeutics Expands Board of Directors with Appointments of Proven Industry Leaders - BioSpace - November 23rd, 2020
- Rare Mutation in the PCSK9 Gene Confers Long Healthy Life - MedicalResearch.com - November 23rd, 2020
- Living through the second wave - Pakistan Today - November 23rd, 2020
- How two blind brothers became Two Blind Brothers for a cause - The Columbian - November 10th, 2020
- How two blind brothers created a one-of-a-kind shopping experience to raise money for a cure - WXII The Triad - November 10th, 2020
- The ethical way to alter organisms - The Boston Globe - November 10th, 2020
- Teladoc Is A Strong Buy: A Radical Healthcare Change Will Come - Seeking Alpha - November 10th, 2020
- Medical Milestone In Boston: 13-Year-Old Gets New Gene ... - November 5th, 2020
- How immunotherapy is revolutionizing cancer care - Genetic Literacy Project - October 29th, 2020
- The good news about breast cancer - The Gazette - October 29th, 2020
- Harris County parents win insurance appeal for 8-year-olds MD treatment - WRBL - October 29th, 2020
- Biohack the ageing process by taking care of this little protein in your body - Lifestyle Asia - October 22nd, 2020
- 'I have faith and I prayed a lot' - News from southeastern Connecticut - theday.com - October 22nd, 2020
- Piqray Improves Overall Survival for Advanced-Stage Hormone-Receptor-Positive, HER2-Negative Breast Cancer With PIK3CA Mutation - Breastcancer.org - October 20th, 2020
- Beating Cancer: Prevention must be 'cornerstone' of EU's new approach - The Parliament Magazine - October 20th, 2020
- Watch: New 5-minute injection a game-changer in breast cancer therapy in UAE - Gulf News - October 20th, 2020
- Homer Glen Mom and Nurse Breast Cancer-Free after Radiation Therapy Clinical Trial at UChicago Medicine Comprehensive Cancer Center at Silver Cross -... - October 20th, 2020
- Teenager among first to receive gene therapy treatment for rare condition - KRDO - October 8th, 2020
- Proposition 14: With Just Handful of Cures, California Stem Cell Agency's Fate Is In Hands of Voters - KQED - October 8th, 2020
- Teenager among first to receive gene therapy treatment for rare condition - NewsChannel 3-12 - KEYT - October 7th, 2020
- Greenbrier County teen to be among first in nation to receive gene therapy for Hurler's Syndrome - WVVA TV - October 7th, 2020
- Regenxbio RGX-121 Clinical Program, And Other News: The Good, Bad And Ugly Of Biopharma - Seeking Alpha - October 7th, 2020
- Women In Longevity Medicine And The Rise Of The Longevity Physician - Forbes - October 7th, 2020
- Timothy Ray Brown, First Patient to Be Cured of HIV, Dies of Leukemia - BioSpace - October 7th, 2020
- Different Types of Childhood Cancer | INTEGRIS - Integris - October 4th, 2020
- Gene therapy company Taysha completes sprint from first funding to IPO - BioPharma Dive - September 26th, 2020
- Focused on the future: Innovative college programs in N.J. pave way for the real world - Jersey's Best - September 24th, 2020
- Burosumab Is a 'Game Changer,' Effective in All Subgroups of XLH - Medscape - September 22nd, 2020
- 10 Forgotten Spiderman Sidekicks They Need To Bring Back | CBR - CBR - Comic Book Resources - September 22nd, 2020
- Genentech Presents New Data From Multiple Phase III Studies of Tecentriq in Triple-Negative Breast Cancer at ESMO Virtual Congress 2020 - Business... - September 21st, 2020
- BCS Announces Partnership With 2nd.MD to Improve Member Healthcare Cost, Quality, and Outcomes - PRNewswire - September 19th, 2020
- Novus Therapeutics Announces Acquisition of Anelixis Therapeutics - Business Wire - September 19th, 2020
- Pace toddler wasn't supposed to survive. Thanks to wonder drug, parents say he's thriving - Pensacola News Journal - September 8th, 2020
- CRISPR can help combat the troubling immune response against gene therapy - The Conversation US - September 6th, 2020
- How Is Ovarian Cancer Diagnosed? Everything You Need To Know - NDTV Doctor - September 6th, 2020
- Genentech Announces FDA Approval of Gavreto (pralsetinib) for the Treatment of Adults With Metastatic RET Fusion-Positive Non-Small Cell Lung Cancer |... - September 6th, 2020
- Gilmore Health: A Q&A Session on Genetic Diseases With Dr. Sony Sherpa - Gilmore Health News - September 6th, 2020
- Our teenage son is turning to stone and is becoming entombed in his own body - The Sun - August 28th, 2020
- Gene Therapy: IT Meets Medicine, But Who Is In Charge? - Walter Bradley Center for Natural and Artificial Intelligence - August 24th, 2020
- Edited Transcript of ISEE.OQ earnings conference call or presentation 5-Aug-20 12:00pm GMT - Yahoo Finance - August 6th, 2020
- Opinion: With any COVID-19 vaccine, humanity will face its biggest moral test - The Province - August 4th, 2020
- These Companies Are Seeking a Cure for Sickle Cell. And Its Just the Beginning for Some Gene Therapy Stocks. - Barron's - July 31st, 2020
- FDA Approves Combination Therapy for Treating Advanced Melanoma - Pharmacy Times - July 31st, 2020
- How Can Technology Help Fight the COVID-19 Pandemic? - IoT For All - July 31st, 2020
- Thomas Jefferson University doctor to be honored at W&J commencement - Observer-Reporter - July 30th, 2020
- First Edition: July 27, 2020 - Kaiser Health News - July 30th, 2020
- These are the most valued tech startups in France in 2020 - Silicon Canals - July 7th, 2020
- What's a life worth in dollars and cents? Should that influence who gets treated for expensive disease treatments? - Genetic Literacy Project - July 1st, 2020