March ~ Kidney Cancer Awareness Month

 

Kidney Cancer awareness is very important to me, because I learned I had it in 2006.

I’m pretty sure I had it before 2006 but in that year I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. I left messages for several of my doctors on what I should do. I finally decided to see my PCP after I got my husband home.

 

When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok – Tom couldn’t drive because of the anesthetic they had given him. I barely made it to the ER and left the car with Tom to park. Tom’s doctor followed us to the ER and became my new doctor.

 

When I was diagnosed in the ER with kidney cancer, Tom’s doctor said that he could do the surgery but that he would recommend someone even more experienced, Dr. Amir Al-Juburi.

 

Dr. Amir Al-Juburi has been so kind to me, almost like a kindly grandfather might be, and he got rid of all 10 pounds of my cancer in addition to my kidney.

 

More than 12,000 people in the UK are diagnosed with kidney cancer each year, according to 2014 statistics.

And although 42% of cases are deemed “preventable”, only 50% of patients survive kidney disease for 10 or more years.  I will celebrate 13 years next month, on May 9!

It’s the seventh most common cancer in the UK and is much more prevalent in males.

But do you know the warning signs of the potentially deadly disease?

Here we reveal the 12 main symptoms of kidney cancer:

1. Blood in your pee  Not until the day I was diagnosed.

You may notice your pee is darker than normal or reddish in color. This could also be a sign of chronic kidney disease and bladder cancer.

2. A persistent pain in your lower back or side, just below your ribs No

3. A lump or swelling in your side (although kidney cancer is often too small to feel) No

4. Extreme tiredness (fatigue) Possibly, although I assumed it was from Cushing’s

5. Loss of appetite and weight loss No

6. Persistent high blood pressure Yes

7. A high temperature of 38C (100.4F) or above No

8. Night sweats No

9. In men, swelling of the veins in the testicles Nope

10. Swollen glands in your neck No

11. Bone pain No

12. Coughing up blood No

If you are concerned about any of these symptoms you should see you GP, they will carry out a series of tests, including urine and blood tests, in order to get an accurate diagnosis.

What are the treatment options?

The treatment will depend on the size and severity of the cancer and whether it has spread to other parts of the body.

These are the five main treatments:

1. Surgery to remove part or all of the affected kidney Yes, all plus some other stuff

This the main treatment for most people

2. Ablation therapies No

Where the cancerous cells are destroyed by freezing or heating them

3. Biological therapies No

Medications that help stop the cancer growing or spreading

4. Embolisation No

A procedure to cut off the blood supply to the cancer

5. Radiotherapy No

Where high-energy radiation is used to target cancer cells and relieve symptoms

For more information go to nhs.uk/Conditions/Cancer-of-the-kidney

The 12 symptoms adapted from http://www.dailystar.co.uk/health/605586/Kidney-cancer-symptoms-treatment-males-females-early-warning-signs

Rare Disease Day 2019

rare disease day

What am I doing for Rare Disease Day?

For me, it’s more that one day out of the year. Each and every day since 1987,  I tell anyone who will listen about Cushing’s.  I pass out a LOT Cushing’s business cards and brochures.

My husband also passes out cards and brochures.

Adding to websites, blogs and more which I have maintained continuously since 2000 – at mostly my own expense.

Posting on the Cushing’s Help message boards about Rare Disease Day.  I post there most every day.

Tweeting/retweeting info about Cushing’s and Rare Disease Day today.

Adding info to one of my blogs about Cushing’s and Rare Disease Day.

Adding new and Golden Oldies bios to another blog, again most every day.

Thinking about getting the next Cushing’s Awareness Blogging Challenge set up for April…and will anyone else participate?

And updating https://www.facebook.com/CushingsInfo with a bunch of info today (and every day!)

~~~

Why am I so passionate about Rare Disease Day?

I had Cushing’s Disease due to a pituitary tumor. I was told to diet, told to take antidepressants and told that it was all my fault that I was so fat. My pituitary surgery in 1987 was a “success” but I still deal with the aftereffects of Cushing’s and of the surgery itself.

I also had another Rare Disease – Kidney Cancer, rare in younger, non-smoking women.

And then, there’s the adrenal insufficiency

And growth hormone deficiency

If you’re interested, you can read my bio here: https://cushingsbios.com/2018/10/28/maryo-pituitary-bio/

What are YOU doing for Rare Disease Day?

 

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National Cancer Survivor’s Day

 

 

Observed annually on the first Sunday in June, National Cancer Survivor’s Day has been set aside to “demonstrate that life after a cancer diagnosis can be a reality.”

Each year on National Cancer Survivor’s Day, events and celebrations are held and hosted around the United States by local communities, hospitals and support groups honoring cancer survivors.  Events may include parades, carnivals, art exhibits, contests and testimonies. President George W. Bush and the National Cancer Institute director each included a commencement at the 2008 celebration.

 

So today is my day and my mom’s day and countless other people’s day.  I’m a kidney cancer survivor – 12 years now!

My mom survived colon cancer TWICE

My sister-in-law survived breast cancer TWICE

My DH survived melanoma and is working hard at surviving prostate cancer.

It hasn’t been all good though.  There have been many more in my extended family who did not survive, including my dad and my aunt. 

 

Congratulations to the survivors on this special “Who Knew” holiday, National Cancer Survivor’s Day

 

 

Unlucky Women! Belly fat tied to lower kidney cancer survival odds in women

Thanks to Cushing’s, I have (and had!) a lot of this.

Belly fat reduces a woman’s chances for surviving kidney cancer, but not a man’s, a new study suggests.

The study included 77 women and 145 men with kidney cancer. Half of the women with high amounts of belly fat died within 3.5 years of diagnosis. Meanwhile, more than half of women with low amounts of belly fat were still alive after 10 years.

Researchers at Washington University School of Medicine in St. Louis found no link between belly fat and men’s kidney cancer survival.

The findings suggest kidney cancer develops and progresses differently in men and women, the study authors said.

“We’re just beginning to study sex as an important variable in cancer,” study senior author Dr. Joseph Ippolito said in a university news release. Ippolito is an instructor in radiology.

“Men and women have very different metabolisms. A tumor growing in a man’s body is in a different environment than one growing inside a woman, so it’s not surprising that the cancers behave differently between the sexes,” he explained.

Excess weight is a major risk factor for kidney cancer, but does not necessarily affect a patient’s chance of survival. This study suggests, however, that the distribution of body fat affects women’s survival odds. But it does not prove a cause-and-effect relationship.

“We know there are differences in healthy male versus healthy female metabolism,” Ippolito said. “Not only in regard to how the fat is carried, but how their cells use glucose, fatty acids and other nutrients. So the fact that visceral [belly] fat matters for women but not men suggests that something else is going on besides just excess weight.”

This line of research could lead to better ways to treat women with kidney cancer, Ippolito added.

The report was published online recently in the journal Radiology.

More information

The U.S. National Cancer Institute has more on kidney cancer.

From https://www.upi.com/Belly-fat-tied-to-lower-kidney-cancer-survival-odds-in-women/2511523328151/

New Clinical Trials for Kidney Cancer

Two new clinical trials for kidney cancer are available at Lehigh Valley Health Network through its partnership with Memorial Sloan Kettering Cancer Center, giving patients options for experimental treatment and participation in research that advances kidney cancer treatment.

The immunotherapy trials test combinations of drugs that cut off blood supply to tumor cells and help the immune system find and fight cancer cells.

A decade ago, late-stage kidney cancer patients had a small chance of living past a year after diagnosis, said Dr. Suresh Nair, medical director of LVHN Cancer Institute.

“The amount of progress that’s happened in the year is staggering,” he said. “Kidney cancer has probably progressed the most among all the cancer areas in the past year.”

On Thursday, about 30 patients made it to their second annual celebration of advancements in kidney cancer treatment. The event, which was sponsored by the Andy Derr Foundation for Kidney Cancer Research and hosted by LVHN and Memorial Sloan Kettering at Lehigh Country Club, also featured a talk by leading kidney cancer doctor and researcher Dr. Robert Motzer, an oncologist at Memorial Sloan Kettering.

Kidney cancer research had a major breakthrough in 2006, when a Pfizer drug sunitinib won approval from the Food and Drug Administration, Motzer said. The drug cut off blood flow to tumors and prolonged life for late-stage kidney cancer patients.

Since then, survival rates continue to climb due to new generations of sunitinib, including one used by LVHN doctors called cabozantinib, and advancements in immunotherapy, which boosts the immune system to fight cancer.

But there’s a lot more progress to be made.

“That’s why efforts like your own are so important,” Motzer said at LVHN’s event. “That’s what gets the work done.”

Every year, more than 37,000 men and 21,000 women get kidney and renal pelvis cancers, according to the U.S. Centers for Disease Control and Prevention, and more than 13,000 die.

LVHN offers six clinical trials for kidney cancers, including the two newest.

New treatments give patients such as Lackawanna County resident Arlene Townsend a second chance at life. She’s participating in an LVHN immunotherapy trial launched last year.

Before her diagnosis, Townsend, 38, was easily irritated and didn’t have any passion for her job or life.

“It use to be get up, go to work, come home, make dinner,” she said. “It was kind of just going through the motions.”

She had to develop a positive attitude to cope with the physical and emotional toll of her late-stage kidney cancer, which had spread to her bones, lung and the lymph nodes around the heart in 2016, she said. Since her diagnosis, she found a passion for refurbishing furniture, let go of her cynicism and found happiness in life’s small moments.

“If I’m driving — it sounds silly — I notice the clouds,” she said.

“You don’t realize how many great things you have in your life until you think you’re not going to have them anymore.”

The change was so apparent that her husband noticed.

“He thinks I’m much happier,” she said.


CLINICAL TRIALS

Lehigh Valley Health Network and Memorial Sloan Kettering have partnered to bring new cancer treatments to the Lehigh Valley.

What is a clinical trial: A study involving patients who volunteer to receive new medications or treatments under evaluation.

Who may participate: Criteria are unique to each trial but often are based on age, gender, health and medical history. They are designed for participants most like those who will eventually receive the new drugs.

Source: Lehigh Valley Health Network

More information: At lvhn.org, search “clinical trials.”

From http://www.mcall.com/business/healthcare/mc-nws-biz-clinical-trials-kidney-cancer-20180406-story.html

March is Kidney Cancer Awareness Month

 

Kidney Cancer awareness is very important to me, because I learned I had it in 2006.

I’m pretty sure I had it before 2006 but in that year I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. I left messages for several of my doctors on what I should do. I finally decided to see my PCP after I got my husband home.

 

When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok – Tom couldn’t drive because of the anesthetic they had given him. I barely made it to the ER and left the car with Tom to park. Tom’s doctor followed us to the ER and became my new doctor.

 

When I was diagnosed in the ER with kidney cancer, Tom’s doctor said that he could do the surgery but that he would recommend someone even more experienced, Dr. Amir Al-Juburi.

 

Dr. Amir Al-Juburi has been so kind to me, almost like a kindly grandfather might be, and he got rid of all 10 pounds of my cancer in addition to my kidney.

 

More than 12,000 people in the UK are diagnosed with kidney cancer each year, according to 2014 statistics.

And although 42% of cases are deemed “preventable”, only 50% of patients survive kidney disease for 10 or more years.  I will celebrate 12 years next month, on May 9!

It’s the seventh most common cancer in the UK and is much more prevalent in males.

But do you know the warning signs of the potentially deadly disease?

Here we reveal the 12 main symptoms of kidney cancer:

1. Blood in your pee  Not until the day I was diagnosed.

You may notice your pee is darker than normal or reddish in color. This could also be a sign of chronic kidney disease and bladder cancer.

2. A persistent pain in your lower back or side, just below your ribs No

3. A lump or swelling in your side (although kidney cancer is often too small to feel) No

4. Extreme tiredness (fatigue) Possibly, although I assumed it was from Cushing’s

5. Loss of appetite and weight loss No

6. Persistent high blood pressure Yes

7. A high temperature of 38C (100.4F) or above No

8. Night sweats No

9. In men, swelling of the veins in the testicles Nope

10. Swollen glands in your neck No

11. Bone pain No

12. Coughing up blood No

If you are concerned about any of these symptoms you should see you GP, they will carry out a series of tests, including urine and blood tests, in order to get an accurate diagnosis.

What are the treatment options?

The treatment will depend on the size and severity of the cancer and whether it has spread to other parts of the body.

These are the five main treatments:

1. Surgery to remove part or all of the affected kidney Yes, all plus some other stuff

This the main treatment for most people

2. Ablation therapies No

Where the cancerous cells are destroyed by freezing or heating them

3. Biological therapies No

Medications that help stop the cancer growing or spreading

4. Embolisation No

A procedure to cut off the blood supply to the cancer

5. Radiotherapy No

Where high-energy radiation is used to target cancer cells and relieve symptoms

For more information go to nhs.uk/Conditions/Cancer-of-the-kidney

Adapted from http://www.dailystar.co.uk/health/605586/Kidney-cancer-symptoms-treatment-males-females-early-warning-signs

Today is Rare Disease Day

rare disease day

What am I doing for Rare Disease Day?

For me, it’s more that one day out of the year. Each and every day since 1987,  I tell anyone who will listen about Cushing’s.  I pass out a LOT Cushing’s business cards and brochures.

Adding to websites, blogs and more that I have maintained continuously since 2000 – at mostly my own expense.

Posting on the Cushing’s Help message boards about Rare Disease Day.  I post there most every day.

Tweeting/retweeting info about Cushing’s and Rare Disease Day today.

Adding info to one of my blogs about Cushing’s and Rare Disease Day.

Adding new and Golden Oldies bios to another blog, again most every day.

Thinking about getting the next Cushing’s Awareness Blogging Challenge set up for April…and will anyone else participate?

And updating https://www.facebook.com/CushingsInfo with a bunch of info today (and every day!)

~~~

Why am I so passionate about Rare Disease Day?

I had Cushing’s Disease due to a pituitary tumor. I was told to diet, told to take antidepressants and told that it was all my fault that I was so fat. My pituitary surgery in 1987 was a “success” but I still deal with the aftereffects of Cushing’s and of the surgery itself.

I also had another Rare Disease – Kidney Cancer, rare in younger, non-smoking women.

And then, there’s the adrenal insufficiency

And growth hormone deficiency

If you’re interested, you can read my bio here https://cushingsbios.com/2013/04/29/maryo-pituitary-bio/

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki