Bee’s Knees 3

This is a continuation of an ongoing knee issue.  It started with Bee’s Knees and went on to Bee’s Knees Continued.  I’m hoping to end my knee pain in the very near future.

A quick kneecap recap:

From https://maryomedical.com/2013/02/18/icy-days-and-mondays/ January 28, 2013:

 I checked the weather and found that school was starting late because of icy conditions.  I put on boots and took the dog out.  It seemed to be raining – if it’s raining, it must be warm, right?  So I didn’t really pay attention (and I had other things on my mind!) and completely missed seeing the black ice.  Next thing I knew, I had fallen on one knee, my cellphone in my pocket bruised my other thigh and my left arm hurt where I’d reached out to catch myself.

From https://maryomedical.com/2016/02/28/bees-knees/

January 2016.

I fell in the bathroom in the middle of the night and hit my left knee on the tub. I used a brace for a few days and it seemed better.

Around January 27-28, 2016, I was in Walmart and had to get a produce bag that was way over my head.  I had to stand on tiptoe…and my knee felt like something ripped.  Thankfully, I had a cart available to use as a temporary crutch.

Got home, used the brace, took Tylenol but the pain got worse.

Thursday, I drove home from choir at church.  My car is a manual so the act of using the clutch, extending my foot that way, made everything worse again.

Friday, we went to the Limp-In Clinic in Greenbriar.   That doctor was going to prescribe Cortef or NSAIDs but I couldn’t take either due to my history of Cushing’s (Cortef) and kidney cancer (NSAIDs).  He prescribed Vicodin and sent me for an x-ray.

January 31, 2016, I got very itchy, presumably from Vicodin so I stopped that and started taking Benadryl for the itchiness.

February 2, 2016, I went back to the clinic for the results of x-rays and  I mentioned the itchiness.  Since I have very limited meds available to me, he recommended an Orthopedist.  I called him when I got home and he didn’t take my insurance.  I tried another doctor who supposedly took my insurance but they didn’t.

February 7, 2016, I really needed the sleep so I took half a Vicodin.  No pain and no itching.  HOORAY!

February 8, 2016, I saw my regular doctor.   She thinks it’s a possible “lateral collateral ligament vs meniscus tear”.

I was surprised that she thought my knee was swollen but one of my therapists showed me later that it was.

She referred me to Physical Therapy (PT) and prescribed Ultram. As of this writing, I haven’t used that yet.

February 11, 2016, 8:30 am  My first appointment with PT.  Since my blood pressure was high, we mostly did assessments.  I had a main therapist and a student. They had to use 3 types of BP machine to do this.

I bent my knee and they took measurements with a caliper.  I lay on my front and they manipulated my knee to see what happened. They also concluded that it was a lateral collateral ligament.

A suggestion – to rest my foot on the walker without the brace and see if gravity helps my knee straighten out.

After this, there was more pain than before but I know this is the right thing to do.

February 13, 2016.  My leg feels a bit better.  I had the brace off last night and almost straightened my knee out.

Somewhere in this period, I learned how to manually move my kneecap (patella) around.  I saw my day 1 therapist again and he said my knee was angry.  Swollen, angry, whatever.  I just want a normal non-hurting knee!

One of the therapists had me doing a stretching exercise and my hip was out of kilter (everything is attached!) since I’ve been walking with my knee bent.  So she manipulated that back into alignment.

February 22, 2016, A new-to-me therapist had me do an exercise with a basketball under my knee, pointing my toe to the left.  I didn’t remember doing that before but she said I had.  Hmmm…

That hurt too much so we moved to a foam roll under my knee.  It was still uncomfortable but I did it, a bit too much, apparently.

Turns out this exercise hurt my “VMO”, which is short for Vastus Medialis Oblique.

“This is the most important quad muscle and arguably the most responsible muscle for knee stability. The VMO’s main function is to control knee extension…” 

February 25, 2016,  My VMO pain still hurt.  I told my regular therapist about it and she worked on it some.  She concurred that my knee was swollen.

February 26, 2016,  I went all day with no brace at all!!  A bit of pain but manageable.

February 28, 2016, and I haven’t worn the brace since the 27th. I still need assistance to get up from sitting but I can see huge improvement.

I still have 6 more PT sessions, finishing on March 16, but I’m really impressed with what they’ve done for me.  I still have twinges of pain and I don’t plan on stepping on tiptoe anytime soon but I can tell I’m on the right track.

March 8, 2016 at 9:48 am

Physical Therapy is sapping what little energy I had 

 I can tell it’s working but I am even more exhausted all the time. I’m taking extra Cortef but it’s not enough…

From https://maryomedical.com/2016/05/05/bees-knees-continued/ May 5, 2016

My left knee is still bothering me, even after doing Physical Therapy since January. <sigh>

It seems to get better, then something happens and it’s back to pain again.  When we were on a trip to New York a month ago, we walked a lot and climbed so many stairs, I had to buy a new brace.

Today is supposed to be my final PT but I don’t think I’m ready.

When this clinical trial came to my email, I just went through the whole survey for this but there was no doctor nearby:

Osteoarthritis Research Studies. Knee and hip arthritis studies enrolling now. No-cost medication. http://curec.lk/1VL5hu9


Fast forward to September 5, 2018

My knee has been bothering me off and on for a while.  I’ve been taking water aerobics and was careful not to do anything that would hurt my knee.  The hot tub afterward was a great place to aim hot water jets at my knee – that would numb any pain for a while.

I realized that the neoprene braces were making me itch so I actually found one with no neoprene – Hooray! “All BioSkin material is hypoallergenic. Latex free and Neoprene free.”  Hooray again!

This last week or so, the pain has been getting worse again so I decided to try a new doctor.  This one seems like maybe – just maybe – he’ll fix things.

He said: “Your previous knee injuries made sense for pain but this spontaneous onset of medial knee pain is a bit strange.  I can only do a limited examination due to the pain and difficulty bending, but it seems to be over the distal insertion of the VMO (quadriceps muscle) with possible inclusion of some joint line tenderness on that same side.

I’d like for you to use ice packs in your knee brace at least three times a day with the goal of calming down the inflammation.

My goal with getting you to sports medicine next week is to re-evaluate it, hopefully with better ability to examine and flex. It may need ultrasound evaluation and/or steroid injection. Since you cannot take NSAIDS, I suggest trying the Ultram that your previous doctor gave you so you can sleep.”

So, next Wednesday, I have an appointment with sports medicine – I might be moving forward. Or not.

 

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/

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30 Years Cushing’s Free!

 

Today is the 30th anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 30 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.  Even though I’m when I got to 10 years NED (no evidence of disease) from cancer, I couldn’t go back on the GH.

However, this year I went back on it (Omnitrope this time) in late June.  Hooray!  I still don’t know if it’s going to work but I have high hopes.  I am posting some of how that’s going here.

During that surgery, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last couple years, I’ve developed ongoing knee issues.  Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.

My mom has moved in with us, bring some challenges…

But, this is a post about Giving Thanks.  The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.  Unfortunately, Dr. Oldfield died a couple months ago.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

To be continued in the following days here at http://www.maryo.co/