Sunday, February 24, 2019

AVN… A New Acronym Is Added to My List

Did you ever notice how may acronyms and abbreviations we need to learn as we navigate through our health journeys? It’s pretty crazy, isn’t it? And I bet we all know exactly what our doctors and nurses are talking about when they use these terms. I recently decided to come up with a list of the acronyms and abbreviations that I have come across over the years. I’m sure I missed a few but here is what I came up with:
·        MCL - Mantle Cell Lymphoma
·        hyperCVAD - Hyper is short for hyperfractionated. CVAD stands for the initials of some of the drugs used: Cyclophosphamide. Vincristine.
·        RBAC - rituximab, bendamustine, and cytarabine
·        SCT: Stem Cell transplant
·        DLI -Donor lymphocyte infusion
·        IVIG - Intravenous immunoglobulin
·        IgG - immunoglobulin (antibody) G
·        GVHD - Graft versus host disease
·        MDS - Myelodysplastic syndrome
·        ITP - Immune thrombocytopenic purpura
·        E. coli - Escherichia coli
·        C-Diff - Clostridium difficile
·        VRE -vancomycin-resistant enterococci
·        CMV - Cytomegalovirus
·        APT - Acute Pulmonary Toxicity
·        RSV - Respiratory syncytial virus
·        MFC - Microbacterium Fortuitum Complex
·        WBC - White Blood cell Count
·        CBC - blood count (CBC) test
·        CT - computed tomography scan
·        PET - Positron-emission tomography Scan
·        MUGA - multigated acquisition scan
·        TEE - Transesophageal Echocardiogram
·        MRI - Magnetic resonance imaging
·        VATS - Video Assisted Thoracic Surgery
·        CPR - Cardiopulmonary resuscitation
·        EKG - electrocardiogram
·        PK - Pharmacokinetic
·        PICC - percutaneous indwelling central catheter
·        GI - gastrointestinal
·        ATG - Anti-Thymocyte Globulin
·        MTX - Methotrexate
·        BTK - Bruton's Tyrosine Kinase
·        PD-1 - drug known as Opdivo
·        FDG - fluorodeoxyglucose
·        SUV - standardized uptake values
·        CAR T - chimeric antigen receptor T cells
·        DTap - Diphtheria, Tetanus, and Pertussis
·        Hib -  Haemophilus influenza type b
·        PCV13 - Pneumococcal conjugate vaccine
·        HLA - human leukocyte antigen

Now you may be asking yourself why I would take time to come up with this list. Well, believe it or not I have a new one to add to my list. I have recently been diagnosed with AVN or Avascular necrosis in my right hip. In short, AVN is caused by the lack of blood flow to the bone, causing it to eventually collapse and die. Here is a write up I found on this:

AVN - Avascular necrosis (AVN), also called osteonecrosis, aseptic necrosis, or ischemic bone necrosis, is a condition that happens when there's loss of blood to the bone. Because bone is living tissue that needs blood, an interruption to the blood supply causes bone to die.
Avascular necrosis (AVN), also called osteonecrosis, aseptic necrosis, or ischemic bone necrosis, is a condition that happens when there's loss of blood to the bone. Because bone is living tissue that needs blood, an interruption to the blood supply causes bone to die. If it's not stopped, this eventually makes the bone collapse.
Avascular necrosis (AVN) is a disorder resulting from a temporary or permanent loss of blood supply to the bone. Blood carries essential nutrients and oxygen to the bones. When the blood supply is disrupted (avascular), the bone tissues begin to break down (necrosis). This can weaken the bone and eventually result in its collapse. If this occurs near a joint, it can lead to the collapse of the joint surface, resulting in pain and inflammation (arthritis). AVN is also referred to as osteoradionecrosis, aseptic necrosis, or ischemic bone necrosis.
AVN can occur in any bone, but most commonly affects the ends (epiphysis) of long bones such as the thigh bone (femur), causing hip and knee problems. Other common sites include the bones of the upper arms, shoulders, and ankles. AVN can occur in a single bone, but more commonly occurs in several bones at one time (multifocal AVN). AVN can sometimes be disabling, depending on what part of the bone is affected, how large an area is involved, and how well the bone rebuilds itself.
Causes of AVN
AVN is caused by interruption of the blood supply to the bone. If blood vessels are blocked with fat, become too thick or too small, or get too weak, they may not be able to provide the amount of blood necessary for the bone tissue to survive. Corticosteroids (such as prednisone and dexamethasone) given during cancer treatment can affect the bone and blood vessels, resulting in AVN.
Other factors that increase the risk of AVN in people who received corticosteroid therapy include treatment with high doses of radiation to weight-bearing bones, treatment with orthovoltage radiation (commonly used before 1970), being older than 10 at the time of treatment, and having sickle cell disease. AVN is most likely to occur during cancer treatment, but it can sometimes happen after completion of cancer therapy.
Steroids and AVN
Corticosteroids are commonly used for treatment of many cancers, such as leukemia and lymphoma. Dexamethasone is also sometimes used for treatment of nausea and vomiting associated with chemotherapy and to control brain swelling. There is no clear explanation as to how steroids cause AVN, but it is believed that they interfere with the body’s ability to break down fatty substances.
These substances can clog the blood vessels, causing them to narrow. This reduces the amount of blood that gets into the bone.
Symptoms of AVN
People in the early stages of AVN may not have any symptoms. However, as the disorder progresses, most people will experience some joint pain. At first, the person may only experience pain when bearing weight on the affected bone or joint. As the disorder progresses, symptoms may be present even at rest. Pain may develop gradually and its intensity can range from mild to severe.
If AVN progresses and the bone and surrounding joint surfaces collapse, the pain can increase considerably and may become severe enough to limit movement in the affected joint. The period of time between the first symptoms of AVN and the loss of joint function is different for each person and ranges from several months to years.
Diagnosing AVN
An X-ray is usually the first test performed when AVN is suspected. It can help distinguish AVN from other causes of bone pain, such as fracture. Once the diagnosis is made, and in the later stages of AVN, X-rays are useful in monitoring the course of the condition.
MRI is sometimes used to diagnose AVN because it can detect AVN in the earliest stages, when symptoms are not yet present.
Bone scans may also be used to diagnose AVN. They are useful because one scan can show all the areas in the body affected by AVN. However, bone scans do not detect AVN at the earliest stages.
A CT scan provides a three-dimensional image of the bone and can be useful in determining the extent of bone damage.
Surgical procedures, such as a bone biopsy, can conclusively diagnose AVN but are not commonly done.
Treating AVN
The goals of treatment for AVN are to improve the person’s use of the affected joint, reduce pain, stop bone damage, and ensure joint survival. Treatment can be categorized as conservative or surgical. In order to determine the most appropriate treatment, the following factors are taken into consideration:
·        The person’s age
·        The stage of the disorder (early or late)
·        The location and the amount of bone affected (small or large)
·        The status of cancer and cancer treatment
·        Conservative treatments
·        Medication – to reduce pain.
·        Reduced weight bearing – to slow the damage and promote natural healing. Crutches may be recommended to limit weight or pressure on the affected joint.
·        Range of motion exercises – to keep the joints flexible. This is also important to maintain movement and increase circulation in the joints. This can promote healing and may relieve pain.
·        Electrical stimulation – to induce bone growth.
·        Conservative treatments may be used alone or in combination, but they do not always provide lasting improvement. Some people may require surgery to permanently repair or replace the joint.
Surgical Treatment
Core decompression – is a surgery that removes the inner layer of bone. This may reduce pressure within the bone and create an open area for new blood vessels to grow. Sometimes a piece of healthy bone with good blood vessels (bone graft) is put in this area to speed up the process. This procedure works best in the early stages of AVN and should help relieve pain and promote healing.
Osteotomy – is a surgery that involves taking out a piece of bone, usually a wedge, to reposition the bone so that the tissue lacking blood supply (avascular area) bears less weight than an adjacent healthy area.
Arthroplasty – is also referred to as joint replacement. The affected bone is removed and replaced with an artificial joint. This treatment may be needed in the late stages of AVN or when a joint is destroyed.
Health Promoting Behaviors/Interventions
Avoid activities that put stress on your joints, including running, jumping, football, soccer, volleyball, basketball, and similar sports. Activities that are good for joints with AVN are swimming and bicycling.
Be consistent with recommended exercises.
Rest joints when they hurt.
Let your healthcare provider or physical therapist know if there are any changes in your symptoms.
Take pain or anti-inflammatory medications as prescribed.

I am at the point where my orthopedic doctor recommends that I get a hip replacement using an anterior approach:
  • A total hip replacement is a type of surgery. It replaces your hip joint with an artificial one. It is also called total hip arthroplasty. An orthopedic surgeon can do these procedures from behind the hip, to the side of the hip, or from in front of the hip. 
  • Total hip replacement with anterior approach refers to surgeries done from in front of the hip. These surgeries may also be called mini, modified, minimally invasive, or muscle-sparing surgeries.
 I am not so sure why this happened to me but it’s not surprising with all the chemo and steroids I have had over the past decade. In truth, I have been through much more difficult things and I expect this to be a breeze for me.

My current plans are to get this done sooner versus later. With me still in a job search I figure I take a few weeks off, get the surgery and then resume my search a couple of weeks after the surgery. I plan to discuss this with my doctor next week.

On my MCL/SCT front, my recent scans and have been fantastic, my blood tests are close to perfect and, Thank God!!!... I am enjoying great health.

Please accept my apology that I haven’t posted in a while. I guess this is a sign that all is well with me.

I would like to again thank my wife, daughters, family and friends for all the support they give me.

This past Friday I went to a to a Switchfoot concert with my brothers Bob and Steve. Here is a link to their song “Float”. Enjoy!!!

Or do you not know that your body is a temple of the Holy Spirit who is in you, whom you have from God, and that you are not your own?
1 Corinthians 6:19

More to come…

http://mantlecell.blogspot.com/

Tuesday, November 27, 2018

5 Years Since My SCT… New Beginnings

11/27/18 – Today I celebrate my 5th “birthday” … or should I say 5 years since I had my stem cell Trans plant. With this being a time of year when we focus on what we are thankful for, there is so much for me to be thankful for. My health has been great, my friends and family continue to be such blessings in my life, and at this 5-year mark I also have the opportunity to celebrate new beginnings.

One change in my life is that recently I have been laid off from my job. I had been with this company for 32 and ½ years. I will always be thankful for the support the company gave me throughout my adventure with Mantle Cell Lymphoma. Also, I leave this company with some great parting gifts like an early retirement package.  One may look at being let go from your job as a bad thing… but I see it as an opportunity to pursue my interests. At this point I am unsure what I will do but I am only 57 years old and thanks to my doctors I have plenty of runway left in my work life. Will I start a new career? Will I start a new business? Will I simplify my life and retire? I have time to work this all out… but no matter what I do I am excited for this opportunity of a for this new beginning.

Another thing that a new beginning and cause to celebrate is that my daughter Alli got married to her fiancĂ© Dustin on October 19th. It was so great to be a part of this as a healthy and energetic father of the bride. During this blessed day I had the honor of being asked to play song during the marriage ceremony, the thrill dancing in the father/daughter dance and joy of having a blast at their wedding. I again thank my oncology and transplant doctors and staff for the opportunity to celebrate such a wonderful event. 

Here is YouTube link of me playing a song at my daughter’s wedding: https://www.youtube.com/watch?v=McV0yOG1AEc

Here are some pictures from the wedding:





  
Another thing I am thankful for is the wonderful Thanksgiving I had with my family. My daughter Jill and her husband Marc hosted me, my wife and Alli and Dustin at their home in Atlanta. Everything was just amazing. It was just so special to spend time with the people who are most important to me. With me 5 years into my SCT and over 10 years since my MCL diagnosis, I never want to miss an opportunity to celebrate life and love. 

If there is one thing that remains a challenge for me on the health front is that sometimes my immune system is a little weak and I get sick with colds, sinus and upper respiratory infections. It seems every year I get sick during the fall season and it takes a number of courses of antibiotics and steroids time to get over it. This year my fantastic doctors and APN’s have been on top of this and have been providing me with proactive IVIG’s to boost my immune system. I don’t want to jinx myself but if sure seems like this has worked. In addition, I have taken other precautions to ensure I stay on my feet. I made sure I have gotten my flu and shingles shots. I recently had a pretty bad case of shingles… trust me, if you are eligible to get the shot, go get it. I guess the bottom line with this is that some of this falls on me. I need to be diligent to make sure I do everything possible to ensure I stay in good health. I do have my periodic scans tomorrow. I have total confidence that all will be fine.

Again, I cannot say it enough just how thankful and blessed I feel.

Here is a YouTube like a great song by NEEDTOBREATHE called “Oohs and Ahhs”, The main refrain states:  
We got oohs, we got ahhs
We got everything a man could need
We got oohs, we got ahhs
Still got a mountain full of mouths to feed


See, I will create new heavens and a new earth. The former things will not be remembered, nor will they come to mind.
Isaiah 65:17

More to come…

http://mantlecell.blogspot.com/

Monday, July 16, 2018

A Happy 10 Year Anniversary


7/17/18 – What can I say??? My blog “My Adventures with Mantle Cell Lymphoma” has become a vehicle for me to report my happy milestones…. and with this post I am more than thrilled to report that on July 17, 2018, I celebrate 10 years since I have been diagnosed with MCL... my health is looking great and even better… I feel great.

Trust me… I make it a point the thank God for every new day I get to spend with my loved ones. I am truly blessed.

Thinking about how far I have come… out of curiosity I decided to search google on “survival rates for Mantle Cell Lymphoma” … I will say that I was a bit shocked at what was returned. It said…
What is the prognosis of mantle cell lymphoma? MCL has a poor prognosis, even with appropriate therapy. Treatment failures usually are noted in less than 18 months, and the median survival time of individuals with MCL is about two to five years. The 10-year survival rate is only about 5%-10%.

A 10 year survival rate of 5 to 10%??? YIKES!!!!!

Looking further I found that the odds are even worse for people who have relapsed more than once…. and as a reminder of my journey... I have relapsed twice (2013 and 2015) plus I also had a stem cell transplant in 2013.

As I ponder on what the google search returned I concluded that this is one of two things… either I am more blessed and lucky than I had ever thought… or that what we get back from google searches is way out of date. My guess is that it is both. I am no expert but I have to believe that a prognosis for MCL is significantly better that what I found in google. 

Know that I am not the type of person that obsesses over these types of statistics… I am not a worrier…. I just cannot think about what may happen in the future… I take each day as it is gifted to me and strive to make the most of it. It is truly with my faith that I believe God delivered me and my family from pain and suffering…and I find it a necessity that we celebrate how good God has been to us.  

As a way to celebrate this happy milestone… my wife and my daughters will be going into New York City to have a nice lunch at the world famous “Carmines” and then go to a matinee of a Broadway play/musical. There is nothing I would rather do than to celebrate with my family.

God is Good, God is Great!!!!

Here is a YouTube link for a song called “Our Deliverer” by one of my favorite bands, Third Day: https://www.youtube.com/watch?v=QhqZxZTY5js

I sought the LORD, and he answered me; he delivered me from all my fears.
Psalm 34:4


Saturday, March 17, 2018

Hope Is the Anthem

3/17/18 – Yeah, I know… I haven’t posted anything since Thanksgiving. The truth is that I really didn’t have much to say. Everything has been going great and I had nothing new to share. All may scans have been excellent and my blood counts have been normal… overall, I just feel so blessed on the health front.

With this post I do have something that is worth posting about. When I started this adventure with Mantle Cell Lymphoma I was 47 years old. Today I turn 57 years old. Can it really be that I am 10 years older than when we began? It’s just crazy me to think this journey has been so long. If I think back to the day I was first diagnosed… when I Googled “Mantle Cell Lymphoma” … when I read all the grim and frightening things about my prognosis…and my life expectancy. 

But that was 10 years ago… a time when Mantle Cell Lymphoma was considered a death sentence… when all you would find on the internet about Mantle Cell Lymphoma were negative survival rates and/or remembrances of those who had succumb to the disease.

But that was 10 years ago… before I met Dr. Goy… before so many wonderful medical advances occurred… before there was a realization that when it came to Mantle Cell Lymphoma there is truly HOPE for anyone who has been diagnosed with the disease.

As I think about my journey I see myself as someone who is a great example that there is HOPE… after all I been treated 3 times for MCL, I have had a Stem Cell Transplant, and yes, a few setbacks along the way… BUT the most important thing is that I’M STILL HERE.

As I said above… I am so blessed with the good health I am experiencing and now I have such high hopes for my future. I plan to make the most of every moment. And yes, my HOPE comes from God and all the great gifts He has bestowed upon me.

Speaking of making most of each moment… I recently attended a Men’s Spiritual Retreat. It challenged us to focus on things that matter most….
To be the best we can be, each day… each moment.
To pray daily, to be charitable, kind and compassionate to others
To be available to serve others… and to be that peacemaker… not an instigator
Instead of complaining, make things better
To help others be better… and never tear them down with criticism. 
…All of this being God focused at all times… being living proof of God’s love.
This was clearly very impactful

To further enhance the message of the retreat one of the men shared this, to help keep us focused on what matters.

George Carlin's wife died early in 2008 and George
followed her, dying in July 2008. It is ironic George Carlin -
comedian of the 70's and 80's - could write something so
very eloquent and so very appropriate. An observation by

George Carlin:
The paradox of our time in history is that we have taller
buildings but shorter tempers, wider Freeways, but
narrower viewpoints. We spend more, but have less, we
buy more, but enjoy less. We have bigger houses and
smaller families, more conveniences, but less time. We
have more degrees but less sense, more knowledge, but
less judgment, more experts, yet more problems, more
medicine, but less wellness.

We drink too much, smoke too much, spend too
recklessly, laugh too little, drive too fast, get too angry,
stay up too late, get up too tired, read too little, watch TV
too much, and pray too seldom.

We have multiplied our possessions, but reduced our
values. We talk too much, love too seldom, and hate too
often.

We've learned how to make a living, but not a life. We've
added years to life not life to years. We've been all the
way to the moon and back, but have trouble crossing the
street to meet a new neighbor. We conquered outer space
but not inner space. We've done larger things, but not
better things.

We've cleaned up the air, but polluted the soul. We've
conquered the atom, but not our prejudice. We write more,
but learn less. We plan more, but accomplish less. We've
learned to rush, but not to wait. We build more computers
to hold more information, to produce more copies than
ever, but we communicate less and less.

These are the times of fast foods and slow digestion, big
men and small character, steep profits and shallow
relationships. These are the days of two incomes but more
divorce, fancier houses, but broken homes. These are
days of quick trips, disposable diapers, throwaway
morality, one night stands, overweight bodies, and pills
that do everything from cheer, to quiet, to kill. It is a time
when there is much in the showroom window and nothing
in the stockroom. A time when technology can bring this
letter to you, and a time when you can choose either to
share this insight, or to just hit delete.

Remember to spend some time with your loved ones,
because they are not going to be around forever.
Remember, say a kind word to someone who looks up to
you in awe, because that little person soon will grow up
and leave your side.

Remember, to give a warm hug to the one next to you,
because that is the only treasure you can give with your
heart and it doesn't cost a cent.

Remember, to say, 'I love you' to your partner and your
loved ones, but most of all mean it. A kiss and an embrace
will mend hurt when it comes from deep inside of you.

Remember to hold hands and cherish the moment for
someday that person will not be there again.

Give time to love, give time to speak! And give time to
share the precious thoughts in your mind.

And always remember, life is not measured by the
number of breaths we take, but by those moments
that take our breath away

I always looked at George Carlin as that man who could find something funny with just about anything. I was WOWed by his serious side… his ability to put life into perspective.

So, I had a lot to say with today’s post. In short…

My health has been great
I’m 10 years older from when my adventures with MCL started
I will always be hopeful with the help of God
I want to make the very best of each moment…
Am I shooting too high to want to be as awesome as I can be each moment???
Probably but I certainly worked hard to get to where I am.
I now feel I need to make the most of it.

Here are some great songs about HOPE and LOVE that are sure to inspire you during this Lent and Easter season. Enjoy!

“Hope is The Anthem” by Switchfoot:  https://www.youtube.com/watch?v=FXIozS9B5E0

“All My Hope” by David Crowder with Tauren Wells: https://www.youtube.com/watch?v=7sxpo5Yg5fs

“The Proof Of Your Love” by For King And Country (Ft. Lauren Daigle): https://www.youtube.com/watch?v=WR3h60V2tik

Rejoice in hope, be patient in tribulation, be constant in prayer.
Romans 12:12

More to come…

http://mantlecell.blogspot.com/

Thursday, November 23, 2017

4 Years Since My SCT… Feeling So Thankful

11/23/17 – It is hard to believe that on November 27th it will be 4 years since my stem cell transplant. I was really hoping that I would have something profound to share with you… something life changing… BUT to be completely honest my life has been extremely boring… and that is AWESOME!!!!

What I can say is that I love the time of year that my SCT “Birthday” and Celebration falls. It is a time when we give thanks for all we have… and I truly have so much to be thankful for… my family, my friends and I am just so THANKFUL for the great health that I have been blessed with. I just feel fantastic, strong, and all of my ailments have disappeared.

If there is anything I would like to pass on to you is that it is good to be alive. With my 9 ½ year journey I have truly learned to not take life for granted and to make the most of each moment that God has gifted me with. Here is a link to a great song that help bring home this point. It is called “Good To Be Alive” by Jason Gray.
Enjoy!!!


Happy Thanksgiving!!!!!

My next follow up with my transplant team is November 30th and my next scans are scheduled for December 6th.

Let them give thanks to the LORD for his unfailing love and his wonderful deeds for mankind, for he satisfies the thirsty and fills the hungry with good things.
Psalm 107:8-9


More to come…

http://mantlecell.blogspot.com/

Saturday, July 15, 2017

A Happy 9 Year Anniversary

7/17/17 – On July 17th 2008 I posted “On July 17th, I met with the surgeon to get the results of the mediastinoscopy. This is when I was given the news that I had Mantle Cell Lymphoma.” This led me on an internet search that returned grim and discouraging results. I am absolutely thrilled to say “Never believe what you read”. Here it is, my 9th Anniversary of being diagnosed with Mantle Cell Lymphoma and… 
I”M STILL STANDING after all this time!!!!

Even better yet, I am healthy and strong. To make things even more exciting and encouraging, I had my port removed this past Tuesday. Now how great is that???
True, my 9 years has been full of twists and turns and ups and downs but…
I”M STILL STANDING better than I ever did!!!!

My Adventures with Mantle Cell Lymphoma has been one that has truly been full of Hope, Faith and Love… and I could have never gotten to where I am without my incredible wife who has been by my side every second of my journey. I hope my journey is seen as an example of why you should never give up… and how by having faith and keeping positive will lead to good things.

As a follow up to my last post, it appears that the scan of my lungs is showing improvement. The hope is that a few IVIG treatments will clear things up. I’ll be getting additional IVIG’s every three weeks for a while. My next scans are scheduled for December and I am confident they will be just fine.

So now that I have no port… I have no disease… and all my ailments are on the mend… What will I do with myself???? I will simply Live, Love and Laugh. Most of all… I will enjoy the wonderful life that that God has gifted to me.

To mark my 9th Anniversary, here is a YouTube link for the Elton John classic “I’m Still Standing”. Enjoy!

Here is another YouTube link for a fantastic song by Peter Gabriel, it’s called “Don’t Give Up”

Cast all your anxiety on him because he cares for you.
1 Peter 5:7