IVIG January 2024 #7

What started as a trial in 2022 has now become a medical treatment. IVIG is now classified as a cancer treatment & preventive for recurring disease.

Between 2020 and 2022 I not only had Covid but multiple pneumonia attacks. My immune system had not recovered from the extremely aggressive treatments between 2014 and 2017 but Covid then destroyed what ever was left of my immune system. The decision to commence a trial immunotherapy was seen as the only way to stop pneumonia. Pneumonia in itself is a killer and with my family’s history of pneumonia the specialist we’re very concerned that even IV antibiotics couldn’t control the pneumonia attacks, if the pneumonia had gone bilateral that would be an end game for me.

Covid could have been what started the endless pneumonia attacks but that’s speculation. But Covid and bilateral pneumonia are almost identical, as visible in these X-rays

So the battle to stop this began happening to me started 21 months ago. I’ve had no pneumonia attacks since they started IVIG. And today is the first treatment of 2024.

As I sit here wondering how I survived not only the levels of treatment since 2014, I started to consider how I survived the 80’s 90’s and 00’s. Too many brushes with death. But the amount of friends that I have lost is freighting. 2023 was indeed a difficult year for us. In two days we face the first anniversary of Charlie Chapman, a long time friend that I had first met in 1984. Charlie passed suddenly on the 6th of January when he attended the Manchester United Vs Everton match with his son in 2023. Then helping and watching one of my closest friends battle terminal cancer only to see him pass in September, Terry Green was a force to be reckoned with and his battle is testament to how strong this man was. But the grief is still overwhelming, I am not sure how other people handle grief but for me it seems to bring every other loss back to the point that I was at for every person I have lost in my life. I made a comment back in 2017 that I knew more people who have passed that living, the vast majority of friends and family are gone – that was 2017.. Now 7 years later it is even harder.

Indeed the irony of grief, what we all know to be so true.

But 2024 could be a real game changer for us. We sold our house in November for three reasons, firstly the well was running dry, our savings were gone and everything I have saved was now invested in the house, secondly we needed to downsize. The last reason which ultimately pushed the decision to sell I unfortunately can not discuss on this site. We are still plagued with a stalker who is relentless.

“Stalking is unwanted and/or repeated surveillance by an individual or group toward another person. Stalking behaviors are interrelated to harassment and intimidation and may include following the victim in person or monitoring them physically or via social media”

It is a crime in any form, in our case it is an individual who has absolutely no interest in our wellbeing and no interest in what we care about.YOU WILL BE CAUGHT

We are only too happy to welcome visitors to our sites and its great to see how many people benefit from these sites, which has now reached 45,000 viewers.   

5th of January 2024

Nice early start this morning. Because I live well over an hour from the hospital , the team do the pre assessment on the phone a few days before admission.

But you never know how things will go after your admitted. The oncologist will make decisions based on the blood test, blood pressure and physical appearance. These decisions can lead to further blood work, MRI’s , X-Rays, CT Scans and even lengthy admissions. There are a few issues that have been monitored and continue to be a concern. Blood pressure was high so a delay until it settles. And my weight is down below 80kgs, not sure if that’s good or bad as we’re just over Christmas… couple of extra Guinness this year. But the Irish answer to any medical issue a cuppa Tea

Blood pressure now stable and here we go. (TEA WORKS WONDERS)

As normal pharmaceuticals, antihistamine and steroids to start.

Roughly 2 hours of IVIG and 1 hour IVIGs ahead. Difference in treatment levels this time the IVIG is double my normal but IVIGs remains the same.

The 100% increase is to see if this would be able to push my immune system and try to resolve recurring and persistent infections. My oncology meetings will increase this year to monitor everything. Im interested to see how this goes going from 30 to 60mg but within the same space of time. I can feel a difference as the tiredness has already commenced, normally that only starts 3 to 4 hours after treatment.

ESR Blood test results

An erythrocyte sedimentation rate (ESR) is a blood test that can show if you have inflammation in your body. Inflammation is your immune system’s response to injury, infection, and many types of conditions, including immune system disorders, blood cancers, and blood disorders.

The range of ESR guideline mm/HR  <14 Max the last 4 test have shown above 40 mm/HR and max of 48mm but today’s is frightening at 55 mm/HR. Unfortunately I was already discharged from the hospital before this result highlighted itself.  At the peak of both my diagnoses in 2014 and 2017 my ESR was at 35mm/HR but certain factors have to be taken into account. Such as my immune system is badly damaged since the Stem Cell Transplant, COVID had a further impact on this and the initial thoughts were that the elevated levels could be due to COVID (This is under research in the US), My oncologist was very concerned when the readings went above 40 but at 55mm it is now a serious issue.

In some ways it’s a good thing that I was ½ way home or the oncologist would have kept me in. He call and I knew from his voice that we had a problem. He is now organizing a number of test – the first will be an NTAP CT Scan. Most likely followed by MRI and PET Scans.

Recovery takes a few days. Only side effects I get tend to be fatigue & headaches. So hopefully all will be good in a few days

“Westering home and a song in the air
Light in the eye and its goodbye to Care”

No idea why these bloody songs keep popping into my mind. I blame my dad on the Scottish ones, as he really loved Scottish Ballads

Disclaimer: I am not a licensed medical professional. The information in these articles are based on my personal experience and research, and it’s not meant to be a replacement for professional medical advice. Always consult with a qualified healthcare provider before making any changes to your lifestyle, especially if you have any pre-existing medical conditions. The site is about Awareness to Lymphoma and explores my own medical, mental and physical approach to therapy and continues into Living with Cancer.

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