IVIG April 2023

Fourth IVIG

IVIG no 4 – Monday 17th April 223

My blood test was excellent and blood pressure was good at 135/85 – Ony one result left which is the ESR but that will not prevent the IVIG

This treatment can take about 3 to 4 hours. Pre meds done which includes painkillers, steroids (Cortisone) and anti inflammatory drips. Then 30mlg of IVIG followed by 15mlg of IVIG’s.

IVIG (Immunoglobulin therapy)

Immunoglobulins are the antibodies produced naturally by the body’s immune system, which help fight infection and disease.

Intravenous immunoglobulin, or IVIg, is a treatment that combines immunoglobulins (im-yoo-no-glob-yoo-lins) donated by different people to treat various conditions. Intravenous means that it is given by a drip.

IVIg and other immunoglobulins are made from plasma.

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 other drugs, such as chemotherapy in particular Rituximab.

The effects I have to IVIG’s are mild, about 48 hours of headaches and my old friend fatigue over about 7 to 10 days. All easy to deal with to be honest- just chill out and let the infusion do it’s job.

It seems normal now that my oncologist leaves students with me on every visit and this time I have two third year medical students. Nice way to pass the time. my medical history at this point is substantial. A 9 year survivor of two Stage 4 Cancer attacks with 3 terminal diagnoses multiple chemotherapy, radiotherapy, biopsies, surgery and the Stem Cell Transplant makes my case extremely rare.

Slight increase in weight to 85kgs will mean a slightly longer infusion time. But everything is checked & double checked throughout the infusion. The weather here has been basically crap since Christmas so my normal routine of DIY had more or less stopped. I always tend to gain weight for the winter months but shred it fast by March but not this year so I’ll start training from next week. I’ve done a few DIY jobs for friends and a few more planned.

My initial lymph node that initiated diagnosis in 2014 has swollen twice in the past month. My oncologist believes this might be a negative reaction to the Covid vaccine I received in mid March. But he has ordered extra blood test to check. I am writing this during treatment and will add results as I get them.

But yet again I am in hospital at the same time as Terry is undergoing treatment 2,650 miles away in Tenerife. It’s a bonded connection. But different treatments as Terry continues to battle Stage 4 Sarcoma. Terry is doing great and will have his 9th round of clinical trial next week

As the fundraising to keep our sites going have not had much impact I decided to commence an Etsy store. Personal items like Zippo’s Jewellery coins and other items went up for sale 6 weeks ago. Anita donated some items with more to come. As a new shop it takes time to develop but with 36 sales so far and 4 return customers it has started to generate business.

https://www.etsy.com/ie/shop/HLAIreland

Between cost, advertising & postage we get left with about 60%. The items are a collection I made for over 40 year’s. Hopefully we will see an increase in sales as we gain positive feedback. Years of selling & customer service help. I now have our website, this blog site and a number of sales platforms working

ESR Blood Test results

My oncologist has returned and my ESR blood test results are abnormally high. An erythrocyte sedimentation rate (ESR) is a blood test that that can show if you have inflammation in your body. This is a vital test as it is a warning that something is not right. He has ordered an NTAP CT Scan CT-NTAP is a Cat Scan examination of combined anatomical regions were neck-thorax-abdomen-pelvis (NTAP), thorax-abdomen (TA), thorax-abdomen-pelvis (TAP), and abdomen-pelvis (AP). But he has also added a temporal arteritis ultrasound…

The CT NTAP will look at the area’s initially infected

Temporal arteritis is a form of vascularise (inflammation of the blood vessels). In temporal arteritis, also known as giant cell arteritis or Horton’s arteritis, the temporal arteries (the blood vessels near the temples), which supply blood from the heart to the scalp, are inflamed (swollen) and constricted (narrowed). The vasculitis that causes temporal arteritis can involve other blood vessels, such as the posterior ciliary arteries (leading to blindness), or large blood vessels like the aorta and its branches. I’ve not been checked for this before, my Mum had Temporal arteritis in her late 50’s early 60’s and it is hereditary. It is also been linked to Lymphoma survivors especially those with a family history like mine.

Temporal Ultrasound first

Followed by CT NTAP

I was allowed to watch the ultrasound fully and I have a good understanding of what I watched unfold but I am not a medical professional and will await the report.

The CT NTAP was aligned to examine the lymph node system – you learn something new every day. This scan was a high contrast scan, and for the first time in a long time it knocked my balance off, didn’t frighten me as much as the head nurse that was there. This kind of disorientation appears like the person has had more than a few pints of alcohol but unfortunately I was stone cold sober.

The concern from the medical staff was that they knew I drove in this morning but they seemed more assured before I left that I was okay to drive.

Tuesday 18th of April 2023 8:45pm Update

Oncologist called- it’s not lymphoma and unlikely to be temporal arthritis. The vein to left side from neck to left frontal lobe appears to have an infection and age related vein degeneration. The oncologist has sent a report to vascular consultant. As always I have kidney stones but nothing sizeable and the abdominal aortic aneurysm (AAA) has increased but still nowhere near requiring intervention I’ll get a copy of the report by Thursday.

The Vascular Consultant will most likely supply greater information relating to this infection and preventative medication. They will also continue to monitor the abdominal aortic aneurysm (AAA) the size of this aneurysm has developed over the past 5 years but if it expands further the first line intervention is a stent and not surgery but this could be months or even years from now, I will know better after meeting them.

The swelling to lymph node on my neck, according to the oncologist, is a result of Covid Vaccines- I am completely up to date with these, my last booster was in March 2023. It’s a concern in my mind that a Covid vaccine can do this. Since Covid Vaccines were introduced both Anita and myself have had every recommended vaccine in total I have had 6 (the first one was a 2 part vaccine) – but I will seriously reconsider the advantages and disadvantage of any further Covid vaccination.

In reality I never expected to walk away from my battle with cancer without issues. The issues are a lot easier to handle than the alternative of a terminal diagnoses back in 2007. People who have gone from terminal diagnoses to cured have a different perception of life. My approach has always been extremely positive and in reality this has a big part of winning the war. Battle scars are a source of pride.

I will update this article when I have further information but that may take a few days or even weeks..     

https://www.etsy.com/ie/shop/HLAIreland