Tuesday, November 26, 2019

6 Years Since My SCT – A Time for Giving Thanks


11/27/19 – It is 6 years since I had my Allogeneic Stem Cell Transplant. This is a such a great thing for me as we all celebrate Thanksgiving. There is no doubt that I have so much to be thankful for. I have the very best family and friends and my health has been better than I have experienced in many years. 

On top of all this, on November 7th I became a grandfather for the first time. My daughter Jill and her husband Marc were blessed with a beautiful baby girl named Millie. It is hard to put into words what a thrill this is for me.

When I look back to 2008, when I was originally diagnosed, I’m not sure I could have seen myself ever being called grandpa. But with great doctors and fantastic medical advancements, I have been gifted with the opportunity to see the next generation of my family. Cancer treatment sure has come so far... it truly makes you think that nothing is impossible. … and with the new treatments I am hearing about it is even more encouraging. Have you heard about the new treatment called Cart T-cell Therapy?

CAR T-cell therapy. A type of treatment in which a patient’s T cells (a type of immune cell) are changed in the laboratory so they will bind to cancer cells and kill them. Blood from a vein in the patient’s arm flows through a tube to an apheresis machine (not shown), which removes the white blood cells, including the T cells, and sends the rest of the blood back to the patient. Then, the gene for a special receptor called a chimeric antigen receptor (CAR) is inserted into the T cells in the laboratory. Millions of the CAR T cells are grown in the laboratory and then given to the patient by infusion. The CAR T cells are able to bind to an antigen on the cancer cells and kill them.

If you know of anyone dealing with a blood-based cancer it may be worth looking into this new treatment option. It sounds awesome to me.

Now, I am planning to be here to see my grandchildren grow up through all their special times… I also have great hopes to live to see my great grandchildren. Hmmm… I guess I want it all... but as I always say, keeping a positive attitude goes a long way.

Speaking of  having it all, here is a YouTube link to a wonderful new song by Matt Maher about how you can truly have it all. It’s called “Lord of My Life”. Enjoy!

Happy Thanksgiving to all.

I will praise God’s name in song and glorify him with thanksgiving.
Psalm 69:30

More to come…

http://mantlecell.blogspot.com/

Tuesday, October 22, 2019

All is Good with “Glitchy Richie”

10/22/19 - I had my scans recently and received the fantastic news yesterday that all my scans and blood work are great! To add to this great news, I will not need to be scanned again for another 12 months.

My wife and I met with Dr. Leslie and she was so pleased to share this great information with us. Although I haven’t dealt with Dr. Leslie much in the past, she was there in 2015 during my relapse and through a few of the big bumps in the road I ran into. At that time, she was updated on my history, how I had been a bit of a challenge with all the aliments I encountered over the years. Her words to us were… “WOW, is this Glitchy Richie? You look so great and you are doing so great. Everything looks great!!!. I am so happy for you.” This, of course was wonderful news for us… but “Glitchy Richie”???...
I wasn’t aware I was given this nickname but I certainly understand why they would call me this being all the side effects, infections, and other critical health events I went through over the years. I truly tested their medical knowledge and skills over the years. Thank God I have such great doctors. Say all this, I must say “Glitchy Richie” is a pretty cute name.

As I sit here today, I have been in remission since October of 2015. This is approaching the longest time I have been in remission since my initial diagnosis in 2008. I don’t want to jinx myself but I am feeling very confident that my days of fighting Mantle Cell Lymphoma have ended…  and let me take this a step further and go out on a limb and call myself “CURED”. Is this accurate? I'm not sure, but as far as I am concerned, I am cured. 

True, I still have that positive result of MDS looming out there, but after all the time that has passed, I have never shown any symptoms. As far as I am concerned a positive MDS test might be another one of the “Glitchy” things that seems to happen to me. Maybe I really don't have it. Based on this I have decided to treat it with the highly technical approach I call the “Ostrich Approach”. In other words, I will keep my head in the sand… and if symptoms show up some time in the future, I will deal with them…. But for now, as far as I am concerned the positive MDS result simply does not exist. I will only worry about it when I have something to worry about. In the meantime, I will focus on enjoying life and look forward to my soon to be born granddaughter who is due the first week of November…. And boy, I can’t wait to meet her.

Here is a link to a song puts perspective to where I am with my life. “Alive and Breathing” by Matt Maher: https://www.youtube.com/watch?v=gYUJjsgd96k
Enjoy!!!

Anxiety in a man’s heart weighs him down, but a good word makes him glad.
Proverbs 12:25

More to come…

Wednesday, July 17, 2019

A Happy 11 Year Anniversary

WOW, how time flies. It is 11 years ago that I was first diagnosed with Mantle Cell Lymphoma. Here I am 11 years later and I am having a great run. I have been free and clear of MCL since 2015. Now this may not seem like a long time… but for me it seems like forever ago. I may seem like a broken record… but I am truly so BLESSED.

I am currently at this point in my life where it is full of many new and exciting things.
As I had mentioned in my last post, I have a new hip. All I can say with this is that I feel great. I am moving better than I have in a very long time.
Also, my wife and I have been on a bit of a health kick. I am down about 40 pounds. I have great energy and I am completely void of any breathing issues.
On my career front, I have started my own business. I will be helping people become their own bosses and taking control of their lives by assisting them with finding franchise business opportunities. This is a mission I am very passionate about being I have recently gone through a career transition of my own. It will be my pleasure to help others find their perfect business. To makes this clear I have named my business “Mission Franchise” www.missionfranchise.com
And the biggest thing which will be new in my life is that I am going to be a grandfather. My daughter Jill and her husband Marc are expecting a bundle of joy in November. 
HOLY COW… I’M GONNA BE A GRADFATHER!!!

As I said, I am so blessed. Could it be that I have reached the light at the end of the tunnel? Only God knows… but I can say without any hesitation that when I look back to the time in 2008 when I was sitting with Dr. Scola, hearing my diagnosis… and being able to hit the fast forward button taking me through past relapses, many bumps in the road and so much more… landing where I am now it is clear to me that due to My Adventures with Mantle Cell Lymphoma … I am stronger than I ever have been… My confidence to take on new big things in my life is stronger than it has ever been… I have a stronger faith than I ever had… My love for family and friend is stronger than it ever has been… … … and I now look to the future with such excitement, enthusiasm. passion, faith, hope and love.

Here is a link to a wonderful song that so much speaks to me. “Counting Every Blessing” by Rend Collective: https://www.youtube.com/watch?v=7X9d4ubvWH4

The Sovereign LORD is my strength; he makes my feet like the feet of a deer, he enables me to tread on the heights.
Habakkuk 3:19

More to come…

http://mantlecell.blogspot.com/

Monday, May 13, 2019

What doesn’t kill you, makes you stronger

In my over 10-year adventures with Mantle Cell Lymphoma I have leaned to look at the twists and turns of life as no big deal. For me… there is no mountain that can’t be climbed, there is nothing I encounter that is cause for worry, losing sleep over or to make me feel sorry for myself.

On April 29th I had my total hip replacement. Today is two weeks after the surgery. I have been walking without a cane for over a week, I am able to start driving today and except for another 6 weeks of physical therapy I am past this with no pain to speak of. As a matter of fact, I was able to walk with a walker on the day of the surgery… I was walking with a cane on the day after… and without a cane by day 3. All I can say is this was a breeze for me.

When my orthopedic doctor first diagnosed me with Avascular Necrosis (AVN) of the hip, he told me that it was pretty rare. But it is a very different story when I went to the John Theurer Cancer Center for my pre-operation authorization. I got an “Oh yeah, that happens with people that have had a lot of chemo”.  So, I guess it is safe to say that AVN can be considered a side effect of my treatments… but the silver lining comes with that knowledge that it was a breeze to get through.

Another thing I have leaned is that I am not, and never have been a slave to my MCL. By no means does it rule my life with concern, worry and fear of the future. My future continues to be very bright and I feel so blessed. 

Here is a YouTube link to a fantastic song by Zach Williams, “No Longer Slaves”: https://www.youtube.com/watch?v=bDnA_coA168

So you are no longer a slave, but God’s child; and since you are his child, God has made you also an heir
Galatians 4:7

More to come…

http://mantlecell.blogspot.com/

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/