My name is Neil Gibson I was diagnosed in 2014 with stage 3 AL Amyloidosis. I had never ever heard of amyloidosis before this.
My prognosis was not good, a matter of months and if it hadn’t been for the CCC, Carmel in 2E outpatients in PAH, convincing me to start chemo, as I was a bit reluctant in the beginning, I would not be here today playing golf and leading a normal life.
So how did we, my wife and I, manage at diagnosis? We started the bewildering task of reading all the information given to patients, such as amount of salt sodium in my diet. That was an eye opener. Going to the supermarket and starting to reading labels for sodium. I could not believe the amount there is in almost all our regular items.
As I had fluid in both legs up to my knees, unable to wear shoes because of my swollen feet, salt and fluid was my main concern. I stuck religiously to my allowance of 1500 mils per day. Lucky for me it was in winter and most times I managed to cope.
My next concern was swallowing food, I had a swollen tongue and was unable to swallow anything of any substance, also I had lost my appetite due to either the chemo or the disease. I wasn’t that fussed on food. My wife had been a nurse for almost 40 years, so it is thanks to her as well as the PAH CCC that she worked out our program for a daily routine.
I’m hoping this article recounting my experiences may help new patients to get into a daily pattern of getting to know their limits and help them take some control of their health again, as when first diagnosed it is mesmerizing just to understand the disease never mind taking in all the does and don’ts.
So I have listed some helpful hints that we worked out over a number of weeks.
- Wake up, that’s the important one.
- Wee
- Weigh
- Write, record your weight you have to know which way you are trending up or down.
We kept a daily diary, recording weight, fluid intake such as water tea, coffee soup, ice-cream all fluids. (It is easier if you get a 200mil cup, and count each cup at the end of the day you will know if you are under or over (, take) your limit.
I basically lived on soup for a number of weeks, until we bought a Magic Bullet liquidizer. This was the best thing helping me get some real protein back into my system. As I could not swallow we blended stews to form a soup the best one that I enjoyed was steak and kidney. Don’t laugh it doesn’t sound good but was really tasty.
Because I had kidney involvement most of my protein was escaping through my bladder, so using the Magic Bullet I made my own protein drinks it consisted of my basic 200mls cup of full cream milk two desert spoons full milk powder one desert spoon of egg powder (available at super market) and Milo, (I found it cheaper than buying them in a store.
With the swollen feet and legs my doctors wanted me to wear compression stockings. Unable to get them on without a big struggle my wife came up with the idea of woman’s tights. This was a god send as it gave my feet and legs structure easy to get on and off, I wore them for 6 months, until the fluid left my body and gradually improved over time.
I hope this will be of benefit to new patient.
I realize that every patient is different even if they have the same type and stage of amyloidosis. It is therefore important that you talk over any of the tips I have suggested with your doctor before trying them yourself.
If other patients have any tips they would like to pass on to my wife and I we are always ready to learn.
August 2020
I have coped with my ongoing chemo for approximately 6 years now living a fairly normal life.
But in march I felt a lump beside my left ear, saw my G.P. had a scan and biopsy and presented to the P.A.
A cancer was found contained in one gland (a saliva gland) but it had to come out. I had a very good surgeon who took great care not to disturb the nerve which, had it happened, could have resulted in a drooping mouth and constant dribbling and being unable to close my eye lid.
None of these things happened and I am now undergoing a course of radiation treatment to stop the cancer returning.
When first diagnosed and treated with chemotherapy , I was told by the clinic to stay out of the sun, and use sun screen, as chemotherapy can make the skin very sensitive leading to the development of skin cancers
Most are basal cell carcinomas but unfortunately for me, mine was a squamous cell carcinoma, mainly because of not having enough skin checks.
I did stay out the sun as much as I could. When I played golf I made sure I “slip, slop, slapped”, but I had infrequent skin check-ups, much to my detriment. So today I am at the end of week 3 of 6 radiation treatment to the left side of my face.
So I’m passing this on to all of you, chemotherapy can make your skin very sensitive and skin cancers can proliferate.
This is a reminder to get regular skin check-ups.
Radiation is not the most pleasant treatment, but with professional and friendly staff at the P.A. they make it barrable I hope this will remind you to get checked.
Since I started my treatment at the PAH Amyloidosis Centre I have been involved in raising money for amyloidosis research. I would like to draw your attention to the PAH Giving Day on Thursday September 3
“This year’s PA Giving Day campaign, We’re all 4 the Heroes, will help to raise $500,000 for patient support, state of the art equipment, staff education and medical research at the PA Hospital Campus to improve health care and ultimately outcomes for patients, their families and the wider PA community”
Every $1 you donate will be QUADRUPLED thanks to our generous matching donors.
To donate; https://pagivingday.co/amyloidosis
Update: The final chapter in Neil’s life
Sadly, it wasn’t the AL Amyloid that ended Neil’s life but an uncontrolled skin cancer.
Neil was prone to BCC ‘s before his amyloidosis was diagnosed but after years of having them treated, they turned to SCC’s and he was always having them removed.
In 2020 he felt a lump on the left side of his face, and it was found to be in his saliva gland.
He underwent surgery on June 11th of that year to remove the saliva gland and lymph nodes from that side of his face. This was followed up with 6 weeks of radiation treatment.
On 22nd December 2020, he went in for a biopsy and was found to have an SCC in his lungs. This was a tremendous shock to Neil and all the family, especially as he had been doing so well from his amyloid treatment.
immunotherapy treatment, which his doctors said would get rid of the spots in his lungs, was started on 11/2/2021. But on 3rd August 2021, a biopsy of lung, found a small cell cancer.
So, on the 11th of August 2021 Neil started chemotherapy treatment for lung cancer.
He then found a lump on the right side of face, but because his doctors thought this growth would go away with the treatment he was already receiving, they decided not to operate. However, the lump didn’t go away, and the lump was eventually removed in September 2021 with a skin graft to repair his face.
By the 18th of October 2021 he we were thrilled to be told that lungs were clear and he finished chemo on 20/10/2021. Life began to take on some normality again with just the amyloid treatment continuing.
Sadly, by February 2022 he was not so well and when he attended hospital on February 21 for his treatment, he was told that he would not be having it as his bloods were not good, but he needed to be admitted for more tests. He was found to have very low sodium which was corrected but further tests showed the small cell cancer in his lungs had returned and was also in his liver.
This was devastating news and after discussions with his family and the doctors Neil decided to stop treatment and be discharged home under the care of his family and palliative care service.
Immediately he got home he wanted to tell relatives, friends and the patients he was in touch with, his decision. He was also anxious to get the message through to everyone that they must look after their skin.
Neil passed away on 5th April 2022.
I would like to thank the PA hospital and staff for all the care they gave Neil during the 8 years of treatment.
Linda Gibson 2022
From the AAN:
“As mentioned in the Gibson story , Neil and his wife Linda, in partnership with the PA Research Foundation were involved in raising a great deal of money for research in the Queensland Amyloidosis Centre led by medical director Associate Professor Peter Mollee and based at the PA Hospital
“This money helped to buy the only microscope in Australia capable of identifying all known types of amyloidosis. It is named The Neil in Neil Gibson’s honour.”
For more information about this patient’s experience you can send them an e-mail using the form below.
