IVIG’s and Sinus Surgery

 3/7/23 – It’s been a while since I posted a heath update. Overall, my health has been good, but I do continue to get sinus, and upper respiratory infections. As a matter of fact, I am on my 12^th consecutive round of antibiotics. It seems as soon as my I take my last pill… the infections are back within a day.

Apparently, this is being caused by a couple of factors.

My igg level: I continue to get my monthly IVIG. It has produced some promising results. In a recent blood test, my igg level was 837. This is the best it’s been in years, but my body is not maintaining antibodies. My Abs CD8 Suppressor is high (2,531) and my % CD8 Pos Lymph is also high (64.9%). Based on these numbers, my doctors feel I need to continue the monthly IVIG’s.

Inflamed Sinuses – I had a CT of my sinuses and it was discovered that they are very inflamed. My ENT doctor believes that one reason my infections have been ongoing is that they truly never clear from my sinuses due to all the inflammation that I have. Based on this we have decided that I will be getting sinus surgery. The surgery is scheduled for March 23^rd.

Between the IVIG’s and the sinus surgery, I am hopeful that I am on the right track towards normal… where I will not need to be on these never-ending rounds of antibiotics.

My adventure with Mantle Cell Lymphoma started when I was 47 years old. In a week I turn 62. I can say without any hesitation that I am truly blessed. My present and future continues to look bright.

 Here is a link to an awesome song the fits well with the crazy time we live in. It’s by Matt Maher and is called “Common Ground”.

Enjoy!

 https://www.youtube.com/watch?v=IiHYUa_fGeU

“To the choirmaster. A Psalm of David. O Lord, you have searched me and known me! You know when I sit down and when I rise up; you discern my thoughts from afar. You search out my path and my lying down and are acquainted with all my ways. Even before a word is on my tongue, behold, O Lord, you know it altogether. You hem me in, behind and before, and lay your hand upon me.” Psalm 139:1-24

More to come…

http://mantlecell.blogspot.com

9 Years Since My SCT – A Time to Give Thanks!

 11/27/22 – No way… has it really 9 years since I had my stem cell transplant? When I look back, it was the day before Thanksgiving. On Thanksgiving Day, my wife and two daughters spent the day with me in the hospital. They brought Thanksgiving dinner to me… sure, I really didn’t have much of appetite…  but what we shared was one of my best Thanksgiving memories. It’s times like these when you realize just how blessed you are and when you look up to God and say Thank You!!!

 Since that day, the blessings have continued. I’ve seen both my daughters get married… I’ve been blessed with two grandchildren… and as I sit here, I can say that the only thing that continues to be a challenge for me is my immune system. I continue to receive my monthly IVIG’s but it has become very apparent that they haven’t produced the results I had been hoping for.

Recently, I seem to get sinus or upper respiratory infections fairly often. This is followed by me going on antibiotics. Throughout the course of antibiotics, I’ll start to feel better… but once I take my last pill, I start to feel sick again. I am up to six consecutive rounds of antibiotics. To add on top of all this, I have had COVID twice this year… in July and in November… and I am up to date with all my boosters.

Of course, I knew that when I started with my IVIG’s that it would be a bit of a process and may require some tweaking. I guess I have to wait and see what my next set of blood tests reveal, which should be sometime after the new year.

Saying all this, for a person who has had MCL 3 time (2008, 2013, 2015) and someone who had a SCT 9 years ago… as I said at the beginning of this post… I am very blessed and I have so much to be thankful for. One of the great things about the anniversary of my SCT is that it always falls close to Thanksgiving. It is a great reminder to me on how thankful I am for all my blessings.

Here is a link to an awesome song the fits well with the Thankful theme of the season. It’s by David Crowder called “Thanks Giver”.

Enjoy!

 https://www.youtube.com/watch?v=nxDKchUybN0

“You will be enriched in every way so that you can be generous on every occasion, and through us your generosity will result in thanksgiving to God.” 2 Corinthians 9:11

More to come…

http://mantlecell.blogspot.com

It's Been Two Years Since My Last Scans - All is Great!!!

 10/21/22 – I just can’t believe that it’s been two years since my last scans. This is the first time I’ve gone this long between scans… and I guess it was for a great reason, my doctors are very confident that my health remains good… and they are 100% correct. My scans showed that all is clear. Certainly, God is Good!

To add to my good news, my igg level is at 763… which falls within the normal range. I guess my monthly IVIG’s are working. God is Great!

Dr. Leslie’s only instructions to me were to get my flu shot (which I did get already), keep up to date with my COVID vaccinations (which I went to get as soon as I left her office) and to enjoy life… especially my two beautiful grandchildren (I certainly plan to do that).

I truly have so much to be thankful for.  Although, it can be difficult ay times, you can never go wrong when you put your trust in God. Here is a like to a f=great song by Chris Tomlin, with some help from NEEDTOBREATH, called “Power”

Enjoy!!! https://www.youtube.com/watch?v=gCVLrAszuig

“The LORD is my strength and my shield; my heart trusts in Him, and He helps me. My heart leaps for joy, and with my song I praise Him” (Psalm 28:7).

More to come…

http://mantlecell.blogspot.com/

A Happy 14 Year Anniversary

 07/17/22 – As the years fly by, there are times that I truly lose sight of my health journey. Except for the ongoing treatments for boosting of my immune system, which is such a small thing when you think about all I have been through, my health has been nothing but great. 2008, the year of my original diagnosis, seems like a lifetime ago.

Speaking of the treatment of my immune system, that is going well. When I first started, my IGG level was always in the low 400’s. Now, after receiving one IVIG per month for the last 6 months, my IGG level is consistently in the 700’s. I will continue to receive the IVIG treatments for the rest of the year and some time in 2023 we will look at where I am and make a decision on if I should have more frequent infusions. have fewer infusions, stop having infusions, or change the dosage I receive

There is no doubt that I live a very blessed life. I have my health, I have my two beautiful grandchildren, I have my two wonderful daughters and their husbands and I have my lovely wife. I truly try the celebrate life every day. After all, each day is a gift from God and living our lives to the fullest is the greatest way to show our appreciation. One way to do this is to always look to show love, compassion and kindness to all the people around us. Here is a link to a fantastic song, call “Nothing More” by The Alternate Routes. 

Enjoy!!! https://www.youtube.com/watch?v=qIuy1a9IdHk

"Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave you." — Ephesians 4:32.

More to come…

http://mantlecell.blogspot.com/

Immune System Update

02/23/22 – I can’t believe how time is flying by. I surely owe everyone an update based on my last post.

I did meet with Dr. Younus and he let me know that my test results showed that I ultimately had zero immune system protection from bacterial infections. I guess the good news is I finally know why I am so susceptible to upper respiratory infections. Based on this he said that the course of action I had to take was to get immunizations shots. These shots are what are typical for young children. Soon after meeting with Dr. Younus, I received 3 immunization shots:

• Haemophilus Influenzae Type B (Hib) - HIB (PRP-T)
• Pneumococcal - Pneumococcal (2 yrs and up) PPSV23
• Measles, Mumps, Rubella (MMR)

The next step would be to rerun the blood test about 4 weeks following the shots and then meet with Dr. Younas again to review the results.

I had another appointment with Dr. Younas on January 31^st. Unfortunately, the immunizations shots did not do anything to improve my immune system. So, now what?

Dr. Younas feels the best course of action is to start a a regiment of periodic IVIG infusions. With this approach I would get an infusion every 4 to 5 weeks. My first infusion is scheduled for March 7^th.

In the meantime, Dr. Younus wants me to be careful with where I go and who I get close to. I not only need to be careful of exposure to COVID-19, I also need to stay away for people who are sick (cold, flu, etc.).

To look the positive side of things I have been feeling well. Since November I have had only one span where I wasn’t feel well and had to go on antibiotic… but other than that everything has been great.

I am very much looking forward to see how the IVIG’s help me. I am very hopeful.

Here is a YouTube link to a great song that helps us think about how God has our back. It’s called “He Is” by David Crowder: https://www.youtube.com/watch?v=ZvvKa9vyixw

Enjoy!

"But if we hope for what we do not yet have, we wait for it patiently."

Romans 8:25

More to come…

http://mantlecell.blogspot.com

8 Years Since My SCT – Taking a Deep Dive into My Immune System

11/27/21 – I am celebrating another anniversary. It is 8 years since my Stem Cell Transplant. I find it lands at the perfect time each year. It always right around Thanksgiving and I truly have so much to be thankful for. I have two beautiful grandchildren; Millie is 2 years old and Calvin is 2 months old. I have two fantastic daughters; Jill and Alli and of course there is Sue, my wonderful wife of 37 years.

I am also very thankful to be in my longest stretch of good health since I was originally diagnosed back in 2008. I am pleased to say that it has been 5 ½ years since I have had any health issues of note.

If I was being nitpicky, I suppose I could point to me not having the best immune system. I do seem to get sick easily. There is not doubt if there is a germ in the room, it will find me… and when it does, I have a difficult time recovering. With this in mind, my friends at the John Theurer Cancer Center have referred me to a doctor who specializes in Allergies and Immunology. His name is Dr. Mohammad A Younus and I had my first appointment/consultation with him on November 1^st. After looking at my case he had me go for a comprehensive blood test. This blood test would take a deeper dive into my immune system than anyone has done before. I have a follow up appointment on November 29^th. 

Via the My Chart application I have had to chance to see some of the results from the blood test results. Some of my results of note (those that were either above or below normal values) include:

• PNEUMOCOCCAL AB (23 SEROTYPES) – all 23 were Low
• IGG – Low
• Abs CD8 Suppressor – High
• % CD4 (T Helper) – Low
• % CD8 Pos Lymph – High
• CD4/CD8 Ratio – Low
• Platelet Count – Low

The CD4 and CD8 are areas I do not believe have been tested for in the past. It will certainly be very interesting to see what Dr. Younus will have to say about them. I have heard great things about Dr. Younus. I am truly very hopeful of what he can do for me.

With all this said, even if Dr Younus can’t help me, I am just so thankful and blessed. In all honesty my health challenges are becoming a distant memory. The one thing from my adventures with mantle cell lymphoma that I will always carry with me is that everyday is a gift.

With us entering the season of Advent here is a YouTube link to my favorite version of “O Come, O Come Emmanuel”. It’s performed by Third Day. Enjoy!

 https://www.youtube.com/watch?v=x7igzA8uupU

A voice of one crying out: Prepare the way of the Lord in the wilderness; make a straight highway for our God in the desert. Every valley will be lifted up, and every mountain and hill will be leveled; the uneven ground will become smooth and the rough places, a plain. And the glory of the Lord will appear, and all humanity together will see it, for the mouth of the Lord has spoken. 

Isaiah 40:3-5

More to come…

http://mantlecell.blogspot.com

A Happy 13 Year Anniversary

 07/17/21 – It is 13 years since I was first diagnosed and all I can say is life’s been great for me.  Back in 2008 I was 47 years old, unsure of what the future held for me. This year, in 2021, I celebrated my 60^th birthday and my future is looking very bright.

At my last appointment, my favorite APN Melissa said “you could now consider your check ups as social visits”. I will happily admit that my health has been nothing but excellent. On top of this I was able to emerge from the COVID-19 pandemic unscathed.

Other than that, my family life has been fantastic. I just had the wonderful opportunity to spend a week with my family and granddaughter. To add to our blessings my daughter is expecting her second child in September.

As I say this, it makes me think about the many people who have not faired as well as I have. At times I do experience feelings of survivor’s guilt or even remorse. I just do not know why God chosen me to recover so well while other still suffer and others have not survived. It is a mystery of life I will never understand. I will always keep the people in my heart who are no longer with us. At the same time, I will never stop celebrating the wonderful gifts of life, survival and good health that God has given to me. I must always remember and be thankful for this gift and never stop trying to make a difference with the time I have been given.

 So, today is July 17^th, the 13th anniversary of the day I was first diagnosed with MCL. Me and my family choose to celebrate this day. It is a day that reminds us of how fragile we all are and that every moment we have is a gift from God.  

 

 Me and my wife enjoying the beach in Wildwood, N.J. (July 2021)

 

Here is a link to a wonderful song about celebrating life call “Rattle!” by Zach Williams

https://www.youtube.com/watch?v=GeTs6s19xX0

 Jesus said to her, “I am the resurrection and the life. Whoever believes in me, though he die, yet shall he live

John 11:25

 

More to come…

http://mantlecell.blogspot.com/