Julie Rohr Has Been Battling Cancer For Six Years
- Julie Rohr, 39, was diagnosed with retroperitoneal leiomyosarcoma, a rare cancer of the muscle tissue, six years ago. It metastisized and in 2018 she was designated as stage IV. In August, doctors informed her there was nothing else they could do
- The mother of two young boys has fluid building up in her lung because of the 12 cm tumor growing on the side of it, but is afraid to get the lung drained even though it would extend her life because of fears she might catch COVID.
- Cancer patients must remain vigilant even after being vaccinated and obtaining a booster. Oncologists tell SurvivorNet that people being treated for cancer should continue to wear masks and social distance.
So begins a devastating Twitter thread from a young mother with terminal cancer.
Read MoreI am trapped. If I get delta these lungs are done for. They wouldn't even treat, based on my condition.
Do you see how this WORKS??
Covid vaccine deniers are getting my bed.
The one I need to survive a little longer with my children. And puppy.
Here they are. 2/ pic.twitter.com/pKWjdneQGd
Julie Rohr ( Í¡° ͜ʖ Í¡ °) (@JulieRohrYEG) September 4, 2021
Rohr, 39, goes on to point out that her parents “are likely going to have to see their daughter go before them” before noting: “Look, I know you didn't cause Covid or cancer. But you certainly mishandled it SO BADLY that now people like me may die sooner than we have to.”
She then asks for more accountability, asking that everyone: “Do better. For those who will live on. Do better.”
When SurvivorNet spoke to Rohr, she was still drained from her viral Twitter thread and a cancer battle that began six years ago when she was diagnosed with what doctors told her was an “incurable sarcoma.”
It was actually retroperitoneal leiomyosarcoma, a cancer of the muscle tissue and one of those rare one-in-a-million diagnoses for which there are no targeted therapies or specialty drugs.
The mother of two young sons, Rohr took an aggressive approach to the disease. She had chemotherapy, radiation, and three surgeries to remove a kidney and parts of her liver, lungs and gallbladder in just the first three years.
Unfortunately, her cancer had metastasized by that point. In a final effort, she went on a trial drug but in August learned that it had not been effective in slowing or stopping the disease from spreading in her body.
Rohr has been stage IV since 2018, and in August, she learned that the cancer was now terminal.
“It’s been almost six years of ongoing treatment surgeries, chemo, trial drugs, radiation, the gamut of what Western medicine has to offer. And I’m pretty much at the end of that journey for Western medicine options,” says Rohr.
“The doctors are not super hopeful that they have anything left to offer me right now. I’m certainly feeling the effects of what they’re telling me my scans say, which is that I have some fairly large tumor growth. There’s a large one on my lung that’s about 12 centimeters which is, I mean, an average lung is about 24 centimeters in length. So, this is half my lung.”
Rohr chose at that moment to start focusing “a lot on my family and rest and nutrients and things that bring me joy, and above all things that bring me calm.”
She vacationed with her siblings and their children, enjoyed game nights with her family, and just last week, was able to see her sons off for their first day of school for the last time.
On Thursday, SurvivorNet followed up with Rohr in hopes of asking a few more questions.
“I'm sorry, but I'm unable to conduct any more interviews at this time. My body needs my full concentration,” she wrote.
“Thank you for understanding.”
The next morning she entered hospice care.
How Cancer Patients Can Stay Protected From COVID-19
Multiple oncologists tell SurvivorNet that wearing a mask is still the best way for cancer patients to avoid contracting or spreading the virus as the dangerous Delta variant continues to surge across the country.
That is recommended even for every cancer patient who has received a booster shot, whether they have terminal cancer or are in remission.
Dr. Paul G. Richardson, clinical program leader and director of clinical research at the Jerome Lipper Multiple Myeloma Center at Dana-Farber Cancer Institute, noted that getting vaccinated is just one of many steps cancer patients should be taking at this time.
“The key is the success of vaccinations, but other strategies in my [multiple myeloma] patients focus on continued precautions and attention to therapeutics – not least as the variants are such a concern,” explained Dr. Richardson.
“We are moving from pandemia to endemia, and as such long-term adjustments and continued caution are inevitable in terms of treatments for underlying and supportive care. Fortunately, however, we are moving towards a more manageable paradigm of therapy/care, although the danger of SARS CoV2 remains clear and present.”
5 COVID-19 Vaccine Questions Answered by Expert Physician
Individuals with cancers of the blood, those undergoing chemotherapy, or patients who recently had any stem cell transplant are the most vulnerable due to the increased risk that their bodies may not produce any antibodies against COVID-19 even after receiving two doses of the vaccination.
That is why masks are so important for individuals with cancer.
“The problem with a lot of the variants, especially the Delta variant and others, is that if you have a low immune response or low antibody titer, which many of these (cancer) patients would have, it may not be protective against getting an infection,” explained Dr. John N. Greene, chief of infectious diseases at the Moffitt Cancer Center.
“So for these immunosuppressed cancer patients, there is no guarantee that their vaccine is effective because [antibody testing] is not recommended outside of a research setting actually to measure their immune response or their antibody levels. And therefore, since it remains a mystery, they should continue to wear a mask and not go into large crowds where people could infect them and others visiting them.”
He continued: “I think that’s pretty sound logic because these immunosuppressed patients and people are at higher risk of serious illness if they were to catch COVID-19.”
Dr. Amrita Krishnan, director of the Judy and Bernard Briskin Center for Multiple Myeloma Research at the City of Hope, told SurvivorNet that she continues to urge her patients – many of whom are at a high risk of not producing antibodies – to wear a mask and social distance.
Dr. Jana Dickter, also from City of Hope, said that those with cancer need to be careful.
“I would also suggest that patients advocate for themselves by having close relatives, family members, and household contacts get vaccinated,” Dr. Dickter told SurvivorNet.
There may also be a third option soon, and a special vaccine is currently in development.
The National Cancer Institute is sponsoring a trial for a vaccine that is specifically designed to protect individuals with cancer from contracting COVID-19. That trial is still in the recruiting stages.
COVID-19 Has Changed Surgery and Hospital Protocols for Cancer Patients
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