IVIG July 2023

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Fifth Cycle 7th July 2023

Looks like a long day between IVIG, Blood test, MRI, NTAP CT and pending biopsy

3 months since the last IVIG and issue that will be checked today. A week shy of 6 years since my Stem Cell Transplant and my prognosis of terminal stage 4 multiple lymphoma, days to live but here I remain 6 years later.

Start of rant

Unfortunately due to financial difficulties the blog site will be ending later this year. After an endless search for a full time job without success with over 300 applications and 2 interviews I have been forced into a decision to retire from the industry I have loved, not my intended exit but such is modern life in logistics. I started in the logistics industry in July 1980, 40 years later Covid comes in and destroys my career. Ireland does not have staff shortages, we have highly experienced unemployed people over 60th that employers tend to ignore. Jobs seekers social welfare over 60th is not good so disability pensions are more suited. I had felt that the right employer would recognise the substantial benefit to employee me especially my ability to train people into the industry but what I consider poor HR and lack of focus employers have not considered the real advantages. At 61 I am now officially on a disability pension, sad but reality, my savings were completely wiped out since first diagnosed in 2014 – outside of private medical I have had to spend close to €40,000 in 8 years and the bills keep mounting.

The reality of this can be spotted by close friends that know I have great energy and personal drive, it is a sad end to a long career but the concern is with the effects of employers not even having the decency to respond to applications on my own mental health

My oncologist signed off the pension paperwork work today and he was saddened by the fact that I can’t gain employment. I simply can’t sit still, never could and I live for challenges.

And this blog site has not successfully got anywhere near the finance needed to continue with nearly 42,000 readers we are short by over €3,500 to continue. 9 years of my life in over 100 articles that have helped so many to understand the need for positive thinking and mental health

In Ireland the pension rate is set at €225.50 per week… even though it is recognized that a minimum wage of €420 per week is not considered a living wage. Try figure that one out. It is heart breaking to stop the WordPress blog but I will not be in a financial position to continue it from September. Our Etsy site has worked at a small level  but nowhere near what we need.   

End of Rant

IVIG

Back to IVIG – still having issues with ESR blood test and further investigations today but I started IV early and will get both infusions over 3 hours . All premeds completed by10:30am and oncologist okayed treatment

Fine needle biopsy done, NTAP CT Scan done and it’s still only 11am……

Oncologist meeting

Blood Test

Oncologist is happy enough with preliminary results but has ordered further antibiotics and blood tests including PSA. B12, ESR, TFT and infection history. I’ll be like a dart board after today. but referring to my urologist for PSA check ….. I hope to get all the results next week

Weight Loss

The Oncologist is concerned about my weight loss as I’m down 6kgs + since April. Further test are to commence in August. But it is not unusual for me to drop by a couple of kilo’s during the summer.

I don’t mind settling on 80kgs as it feels healthy. Prior to my first diagnosis in 2014 I averaged about 92kgs. My original fighting weight was 13 Stone (82kgs) and that was 40 years ago..

PSA Prostate-specific antigen

The prostate gland is located just below the bladder in men and surrounds the top portion of the tube that drains urine from the bladder (urethra)

Prostate-specific antigen, or PSA, is a protein produced by normal, as well as malignant, cells of the prostate gland. The PSA test measures the level of PSA in the blood. For this test, a blood sample is sent to a laboratory for analysis. Mt prostate showed a enlarged in my last CT Scan which was a new event. I will be meeting my urologist to discuss this further next month.

Caudate Nucleus

The caudate nucleus (CN; plural “caudate nuclei”) is a paired, “C”-shaped subcortical structure which lies deep inside the brain near the thalamus. It plays a critical role in various higher neurological functions

this plays important roles in various other nonmotor functions as well, including procedural learning associative learning and inhibitory control of action, among other functions.

A small, most likely benign tumour has appeared on my last NTAP CT deep within the Caudate. This will now be monitored before intervention but it was never spotted before which is a concern.

Fatigue

My old friend is back. And from here in for the next few days “Fatigue” it can take days to settle and zero warning but it’s a small price to pay. I have yet to get used to this and the majority of advanced cancer patients will agree with that It is a battle in itself as you feel completely drained

UPDATE ; I was let home and did not need to stay overnight …..

Flatulence

New addition to side effects

IVIG & IVIGs medications can cause gas by speeding up or slowing down your digestion. This can increase the amount of gas released in the stomach, which can increase belching or flatulence. This gas buildup can be both painful and uncomfortable. So along with substantial fatigue I also got flatulence and the painful discomfort in the lower intestines. Not nice and it commenced after midnight. I remembered an old school saying 

“A fart, a fart is a message from the heart to tell the bum there’s more to come” 

But thankfully it never followed through 

Conclusion

Not really sure what’s next but due to initial clinical trials back in 2017 I assume it’s all just completing yearly checks.

I have a few articles that I want to finish up on the site between now and September.

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

UPDATE 10th July on Blood test

Erythrocyte Sedimentation Rate (ESR)

What is an Erythrocyte Sedimentation Rate (ESR)?

An erythrocyte sedimentation rate (ESR) is a blood test that 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.

Erythrocytes are red blood cells. To do an ESR test, a sample of your blood is sent to a lab. A health care professional places the sample in a tall, thin test tube and measures how quickly the red blood cells settle or sink to the bottom of the tube. Normally, red blood cells sink slowly. But inflammation makes red blood cells stick together in clumps. These clumps of cells are heavier than single cells, so they sink faster.

If an ESR test shows that your red blood cells sink faster than normal, it may mean you have a medical condition causing inflammation. The speed of your test result is a sign of how much inflammation you have. Faster ESR rates mean higher levels of inflammation. But an ESR test alone cannot diagnose what condition is causing the inflammation.

My ESR is still extremely high. The range of ESR guideline mm/HR  <14 Max but mine is at 45 down from 46 last teat but this time last year it was at 16. Last 4 test have shown above 40 mm/HR

B12 is good and within range TSH is good

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