IVIg September 2022

Prior to receiving my first treatment in early July 2022 my immune system had never fully recovered from the extreme levels of chemotherapy, radiotherapy, stem cell transplant and then COVID19. Due to Coronavirus my already compromised immune system took a wallop. Multiple chest infections, recurring pneumonia getting more aggressive with each attack and viral infections all battled without medication

In early May 2022 my Oncologist decided to tackle the reoccurring chest infections by using I.V.I.g

IVIg is used to reduce the effects of some inflammatory conditions that involve the immune system, also known as autoimmune diseases. It’s also used to increase levels of immunoglobulins if these are low, or have been lowered by treatment with aggressive chemotherapy drugs

Round 2 begins

This time I don’t need a Covid test – which after nearly 2 1/2 years of Covid feels strange. I’m not going to be objective but it’s difficult to understand how this is not necessary when entering a chemotherapy ward. The IVIG, as above, is classed as cancer treatment and the procedure is administered on a chemotherapy day ward.. the Covid Tracker App showed 21 deaths from Covid last week in Ireland. One of the main effects of chemotherapy is the impact to cancer patients immune system. It’s a major part of why I am having this treatment. And I fully intend to raise this question with the medical team. The IVIG infusion will be done on Monday 26th but I have commenced writing this article on the 22nd.

IVIG has changed things for me since July- 3 months without a chest or viral infection. I had one bad night about a month ago, I was physically sick – this is rare for me, even during extremely aggressive chemotherapy I never vomited, it’s not happened for years, but that night I was violently sick. I wasn’t sure if it was food or a bug but middle of the night I woke up and darted to the toilet. Definitely not related to IVIG and no recurrence or after effects. The only thing that seemed to have hit was my old friend fatigue. This is a known side effect so I was prepared, light house work & some gardening, and taking the dog for a walk.

Just a note about Alfie.. He is a “Short Legged Double muscled Jack Russell” (https://coetzerjackrussell.co.za ) with a beautiful nature but hates walking, first dog that I’ve ever encountered that has to be dragged out to walk and out of bed. But on saying that he can go on mad runs around the house & garden. Like all Jack Russell’s he is a mischief maker.

Thursday 22nd September 2022

I had a pre assessment phone call from the chemotherapy ward. They asked multiple questions relating to both the last IVIG and my current health. I did ask why the Covid test was not necessary and basically because I have no symptoms of Covid I’m considered safe. As we all know the Covid test can be somewhat hit & miss and doctors can consider symptoms v’s negative test. But I’m good to go on Monday

Monday 26th September 2022

Update on Cancer Warrior Terry

Monday is important to me in more ways than one. I wrote an article in June called Cancer Warrior Terry , Terry is stepping up his war against Sarcoma. He has successfully destroyed multiple cancer sites with just the main tumour remaining. This outer ring of tumour is resilient to his last chemotherapy regime. Spearheaded by his brother Andy they have successfully organised a meeting in Madrid with one of Europe’s leading Sarcoma Research Oncologist who conducts clinical trials on advanced Sarcoma patients. As they commence my infusion, these two incredible individuals will be flying from Lanzarote to Madrid to meet the oncologist. It’s been a substantial battle, the support & research conducted by Andy is beyond what I am capable of describing. They have faced obstacles with such positivity I have not witnessed in years. They make “Together we are stronger” a reality that has kept Terry beating his initial diagnosis, when Terry was diagnosed he was given 3 months to live in early March 2022 and 6 months later he is as strong if not stronger than the day he was diagnosed and on a plane to Madrid. It is inspirational to see what Terry and Andy have accomplished so far and their war against Sarcoma continues, No one fights alone

Treatment

I live about 60klms from the hospital, so the day commenced with a drive from Killarney through West Cork into Cork City. County Kerry has been called “The Kingdom” since the first century. It’s said in Kerry that, “There are only two kingdoms, the Kingdom of God and the Kingdom of Kerry.” Use of the nickname “The Kingdom” to refer to Kerry dates back to 65 AD when one of the O’Connor clan took control of the area. It is a stunning part of Ireland and we love living here. And it’s a beautiful drive, crossing into Cork via the magnificent Kerry mountains, great time to prepare myself mentally for the day ahead I will explain this in detail in my next Mental Health article which i have started planning.

The treatment begins with a blood test, prior to any cancer or immune therapy blood analysis are done, basically to insure the patient does not have any blood or function issues. Couple of extra blood these included a VirScan, LDH, CBC and a few others. Have to wait for the results – the CBC is the one that’s really necessary for today.. heat pack needed to help the veins, a long term issue due to amount chemotherapy from 2014 to 2017.

And I’m admitted into the chemotherapy day ward. Even though this is in the new wing of the hospital they had decided not to rename the ward. Glancing around it brings back memories from my ABVD chemotherapy treatment in 2014. Such a long and winding road many battles fought and won. As always a song pops into my head “All the time in the world” Louis Armstrong, I love the song but I’ll be humming it all day….

IVIg takes about 4 to 6 hours to complete, blood pressure 135/75 which is really good (traffic was heavy on the way into Cork)..I am also weighed in at 81kgs dressed and estimated at 78.5kgs fixed, close to my original fighting weight, I’ve always considered every part of my treatment to be a fight, mentally & physically I am entering a battle field and I like winning. All treatments at this level includes waiting, it is a big part of the mental pressure but I have great patience. Some test can take months to get results, but the necessary blood test for this treatment takes about an hour. As my blood pressure showed I’m cool, calm and ready for this. 9:50am and bloods are good so the treatment commences.

Line in, antihistamine injection and steroid injection (these are to prevent infections from IVIg) and the IVIg is started

And my oncologist is in early with me. Very happy with my progress and decides to do a full physical. He wants a Lumbar MRI as my sciatica has played up and an ultrasound on my Triple A (Abdominal Aortic Aneurysm) this was first discovered during test in 2014 The aorta, the largest artery in the body, is a blood vessel that carries oxygenated blood away from the heart. It originates just after the aortic valve connected to the left side of the heart and extends through the entire chest and abdomen. The portion of the aorta that lies deep inside the abdomen, right in front of the spine, is called the abdominal aorta.

Ultrasound first for Triple A.. good thing I decided against breakfast as I would have needed to fast for 7 hours They checked everything, Aorta, kidneys, gallbladder, spleen and liver. I should get all the results later & tomorrow. MRI dept are very busy but I’m back up on IVIg. Most of the long term medical staff know me here and we get on well together – I have great time for these people and total respect. I have a high pain threshold which helps, always be extra kind to these incredible people they are gods angels on earth.

Worldwide shortage of IVIg as basically there are not enough donors and the treatment is also been used more in clinical trials. I mentioned to the oncologist that I’d be happy not to have further infusions as the reduced supply needs to get absorbed into people who need it badly. Terry sprung to mind as I said this, to be honest he is constantly on my mind as his battles are getting complexed . Radiotherapy, Chemotherapy, surgery and IVIG are all options open to Terry’s medical team. Approaching 3 hours now including the 30 minute gap for the ultrasound. But first IV completed and now an additional 10mg of IVIg’s begins but this one is set at a faster pace and should last about 40 minutes . It’s 10mg more than the first round. Instructed to get another Covid vaccine next week with early flu jab

Changing the words of

The Sound of Silence

Hello fatigue , my old friend
I’ve come to talk with you again
Because a vision softly creeping
Left its seeds while I was not sleeping
And the vision that was planted in my brain
Still remains
Within the sound of silence

In restless dreams, I walked alone
Narrow streets of cobblestone
‘Neath the halo of a street lamp
I turned my collar to the cold and damp
When my eyes were stabbed by the flash of a neon light
That split the night
And touched the sound of silence

And in the naked light, I saw
Ten thousand people, maybe more
People talking without speaking
People hearing without listening
People writing songs that voices never shared
And no one dared
Disturb the sound of silence

“Fools” said I, “You do not know
Silence like a cancer grows
Hear my words that I might teach you
Take my arms that I might reach you“
But my words, like silent raindrops fell
And echoed in the wells of silence

And the people bowed and prayed
To the neon god they made
And the sign flashed out its warning
In the words that it was forming
Then the sign said, “The words on the prophets are written on the subway walls
In tenement halls”
And whispered in the sound of silence

Source: Musixmatch

Songwriters: Paul Simon

The Sound of Silence lyrics © Paul Simon Music, Sony/atv Songs Llc

Fatigue & headaches play a big part in IVIg. Particular for me it’s fatigue but I’ve been warned that the extra 10mg will cause substantial levels of fatigue for 4 to 6 weeks, Fatigue is a feeling of constant tiredness or weakness and can be physical, mental or a combination of both. Chemotherapy & cancer related patients get high levels of fatigue sometimes lasting years at random intervals generally unexpectedly, hummm let’s see what happens. Fatigue is quiet impossible to beat, the only real way to ease it is basically to chill out.

Booked in for another Covid 19 booster and The Flu Jab on Friday