Sue, hi. Thanks so much for joining Conversations today. So grateful for your time.
Thank you. My pleasure.
Sue, let me first ask you about ALL. Most people know that leukemia is a blood cancer but may not realize there are 30 to 40 different types of leukemia with different prognosis and protocols. What is acute lymphoblastic leukemia that is referred to as ALL?
Yes, that is true.
So with ALL there are 2 types b cell and t cell and with b type there are at least ten variations whereas t cell is only 2
Mine is called Philadelphia chromosome positive , which I carry a genetic mutation. This apparently is a very bad thing
Not a good disease to get. When I was first dx the first doctor hold me to look at the 5 year survival rate. Well that’s not very encouraging. He did not realize I am so busy. Haha
Take me back to that time, Sue. What your symptoms BEFORE diagnosis?
So before the dx on Wednesday October I was working full time for the school system and maintaining a private practice
I was fine. Very healthy. Fat. Well overweight. All good so on Wed Oct 16 2019 I was at work at 7am all good. 8am 9 am 10 am all good. At 11 I had a little headache and my left arm hurt and wouldn’t move
Hmmm. So you hadn’t been feeling ill before that in anyway?
I felt sick and dizzy called the school nurse, my boss, my hubby and my doc and left work.
No prior illnesses. All good. So crazy. One random Wednesday morning my arm hurt, 2 days later getting a cancer dx and meeting with an oncologist.
So my doc sent me for a MRI on my left arm and shoulder which seemed crazy because I had fever dizzy head ache felt sick. Went for MRI that night, last appointment in radiology and got results Friday morning. They sent for a full body xray and more blood work. Took about a month to get fully dx.
You had mentioned that you have a lot of family with cancer. Let’s back up to that history because that’s important.
Yes, my family history is terrible. Here’s the short version:
My maternal grandmother bubby, Chava, had 4 girls. 3 had breast cancer and all 4 of them lost a child or 2 to cancer. My mom dies at age 37 from breast cancer. I was 11. She got sick when I was 8.
My little sister, bio sister died at age 28, leaving 3 kids ages 2, 3 ,4. Several first cousins died young. Phyllis Anne had breast cancer then colon cancer and died age 51.
Her little brother Stevie has kidney cancer died age 63. They have one sister left.
Esther also breast and colon cancer dies age 70. Then next sister, Sylvia, dies age 62 from heart attack; one son dies age 56 from heart attack, Tyler. and little brother myles age 50 from stomach cancer.
Next sister, Mindel, who was my mother dies age 37. Then little sister Betty gets dx about 60 with breast cancer and is still living. She just turned 90.
And have you been able to track that any of these family members had the same Philadelphia chromosome mutation?
Now what is really awful is that I have 3 kids. Oldest has non Hodgkin’s lymphoma and middle son has skin cancer. And my little girl, thank God, she is ok.
My hubby has prostate cancer and a few months ago finished Proton therapy at university of MD. This is not good for his male ego but he is still very funny. So we got to be each other’s caregiver.
No one else has Philly chromosome. That we know of yet. They are tracking my sister’s kids for
Lynch syndrome. We helped raise my sister’s kids. Very close. Jewish families. Haha she was a cpa. Brilliant girl. She had bone lung and breast cancer. 3 primaries.
So Philly chromosome may indeed to contribute to cml , but no one carries that d x
Clearly, cancer does run in families. When you mention this history to your oncologist, what does he say?
I agree so I have had thousands of dollars in genetic testing and nothing shows up yet…. very frustrating. I need these scientists to work harder. I have to work hard to fight this disease.
So after the bmt I had 2 d.l.i. donor leukocytke infusion to boost me up and it really worked. Today, I am in remission now. They won’t say cured.
I have to tell you that I am so lucky… hubby, kids, grandkids. The whole family plays such a huge role in my life.
Family is so crucial in times of fighting against disease.
Are you on any post – BMT meds? Anything preventative?
I just thanked my donor on Facebook. She is 23 and lives in Israel. I told her I think we are like 15th cousins. We matched on 16 blood proteins.
Yes, thank you. So I am on daily chemo. Took ponatinab for a research study. Now I’m on its cousin: imatinib mesylate. 200 MG every day.
No wonder I have no hair. Also takec10 MG of high blood pressure and an antifungal and eyeball drops and skin crimes for gvhd.
Those two meds are specific for philly chromosome +?
Yes, there are several meds specific for the Philly chromosome. Sooner of my favorite ( not) procedures were lunbar punctures like every week or everywhere week like getting a spinal. I have a phd and lots of initials. I need my brain.
But cancer, chemo and radiation had probably turned my brain to mush. Haha
Actually, I am going to present at the SIO international conference with my son in October… SIO is Society.of Integrative Oncology. I think being expressive about one’s emotional healing is critical in these kinds of diagnosed.
I wrote 2 books and self-published them. Suzie Q fights leukemia and Suzie Q gets a bmt
My 9 year old grand daughter was the illustrator for both books. They are for kids.
Here’s a link to the Suze Q BMT book on Amazon.
And to Suzie Q fights leukemia.
They read like Dr Seuss because I’m in touch with my inner child.
Once upon a time along long time ago far far far in the land if ca lived loo and a literary suzie q
I did lots of painting. Mediation, music therapy, yoga , prayers. Mostly the Psalms of David,, and other depressive techniques to heal. I do hope all my kids will be ok. My docs think it’s too weird about a mother son blood cancer thing. But now the genetics people won’t study us anymore because i have new blood
Tell me more about your books.
Aww . . . they are so much fun. They are for sale on amazon
Is there a different prognosis and protocols for children with ALL?
Can you give me the link to the books so people can easily find them, Sue.
Yes, when I was first told I had open space lesions it didn’t occur to me that cancer and it took another to figure out leukemia. Most people who get all are between 2 and ten years. There is a college kid from Texas who had ALL and I love to watch him on TV. His name is Andrew Jones. University of Texas. He was treated at MD Anderson.
I want to close by asking about your clinical and trial work. You have some expansive and impressive experience.
Sue, can you give us a summary of your teaching and clinical background. It’s the longest CV, I have ever seen!
I’d like to start my second career working with oncology patients.
That would be like your 12th career.
What do you want to do with oncology patients? Working as a clinician/therapist for cancer patients?
Yes I’m married nearly 45 years. I have 3 kids, all married, 6 grandkids. They are expensive . Social work pays terrible. So I always worked more than one job. Worked in the schools with special needs kids. Then you are done at 3 so I had a private practice and saw clients at 3 4 5 6 7 8 etc. Whoever canceled is when we had dinner. Always worked as therapist.
And I always taught and supervised both undergrad and graduate
So I would like to offer more CAM. Complimentary and alternative therapies integrative medicine with other cancer patients. I can see from my empirical evidence anecdotal stories.in the waiting rooms, the cancer centers and Facebook groups. People stay very focused on their emotional life!!
So I would like to help others heal using EAT. Expressive arts therapy techniques: poetry therapy and painting really helped me a lot.
You have the perfect background for this, Sue.
I know you will dive off the deep end and start swimming like you have had for all your 40+ years of experience.
Thank you. And now after going through this… although I do not understand why no one in my family gets a cold. Always cancer…. not good
Thank you for the vote of confidence
Hopefully, we can control the chemo brain and side effects.
And I need my body to cooperate at least a little.
Sue, you are so inspirational with such a positive light and spirit.
Thanks for talking to Conversations today.
I do hope my books helps other kids with cancer.
It certainly will.