New Member to Pancreatitis Support / Patient Intro

[Ernest2]

Hello Pancreatitis Support,

I'm a CLL type Leukaemia patient (and part of a great HU community for that. Its a Chronic condition). CLL implies gene defects. DX early 2011, TX 2014/2015 with Chemoimmunotherapy.

Also got suspect Polygenic Hypercholesterolemia and been on Atorvastatin since late 2020 with some breaks and temporary switch to Rosuvastatin then back to Atorvastatin.

Current symptoms:

- Nausea (exercise level related) since 4th COVID jab 3rd March (I'm thinking the jab has just shown up an underlying health issue). In last 2 days this symptom may have improved (fingers toes etc. crossed)

- Liver inflammation mildly elevated levels of ALT and AST

- Raised level of Serum Ferritin (from my already high levels caused by blood transfusions in 2015)

- Bad digestion (Lunch is a problem area if I try to start work unless I leave work until 4pm)

- B12 Insufficiency (I have to supplement. I don't have the stomach enzyme issue to explain)

- Abnormal bowel habit (After lifetime issue was fixed by FODMAP in 2020 but then abnormal again following Antibiotics last Sept)

- LHS abdominal discomfort (might be mild Scoliosis though)

- My weight is at the low end of normal BMI.

- HbA1C in normal range but raised 2 points from my normal

Family considerations: Father (& Grandfather) also had CLL and in addition Father had gallstones. One grandmother with diabetes.

Alcohol consumption: Tea-total since late 2020 and about 3 units a week max before then.

Other consideration: In year 2000 I had bad problems with the digestion that were never resolved. My weight is at the low end of normal BMI.

So I have to admit I don't have any experience/knowledge about the Pancreas but would like to join the group to learn more in order to have intelligent and constructive discussions with my clinical team.

I would be interested about intermittent fasting, and if that might help give the pancreas some R&R, also diet & exercise ideas.

So I hope you might accept me as a member while I try to get a diagnosis for the above.

Many thanks,

Ernest

Picture: When I first joined the CLL HU group Bears were a theme. And I love the smell of wallflowers as you can see.

[EPI14]

Have they done genetic workup for underlying causes of your leukemia, PEI, and liver issues? My daughter has Shwachman-Diamond Syndrome (genetic bone marrow failure disorder), which causes her PEI, other digestive issues, elevated liver enzymes, increases diabetes risk, and also predisposes her to leukemia (most commonly AML, but other types can happen, too). Did you have any blood and/or infection issues before CLL?

[Ernest2 in reply to EPI14]

Dear EPI,

Many thanks for that thought.

I'm no expert, but there are multiple areas associated with CLL.

A quick search reveals list:

ATM, BIRC3, MYD88, NOTCH1, SF3B1, TP53, EGR2, POT1, NFKBIE, XPO1, FBXW7

. . . . although that list includes some that are just suspect areas (one or two I don't recognise). That list taken from:

ncbi.nlm.nih.gov/pmc/articl...

In general they say that CLL patients typically have more mixed up genes than the general population and most have other comorbidities. So in my case the suspect Polygenic Hypercholesterolemia (i.e. multiple genetic faults)

Now genetic testing is not a regular activity yet in the UK, and I guess over the years I've only had one or two genetic tests for things I don't remember.

We do lag behind adopting new ideas.

In my case whilst I now have low Ig following chemo, my practical immunity is still not bad.

I've never had antibiotics for respiratory issues, other than prophylactic.

The antibiotics in Sept last year (which I now regret) were just prophylactic for an insect bite.

More bloods tomorrow, and hopefully a chat with the GP this afternoon to get some more tests added to check the Pancreas is ok.

For PEI would this be a list or are there others?

CASR, CEL, CFTR, CLDN2, CPA1, CTRC, PRSS1, SBDS, SPINK1, UBR1

That link from Heritable list, follow the link from:

cincinnatichildrens.org/ser...

I am concerned about gallstones as my father had those.

Best wishes,

Ernest

[EPI14 in reply to Ernest2]

Did you have pancreas or digestive issues before your CLL? If yes, then it may be worth exploring the PEI genes you listed above.

The genetic changes in CLL you listed are probably a result of CLL progression, where more and more mutations are accumulated in the blood cells over time.

The genes that can cause PEI, on the other hand, are in-born...so people are born with them in every cell of their body.

[Ernest2]

Hi EPI,

Sorry if I wasn't clear but the genetic areas I listed are just possible ones for all CLLer's, not ones I've got.

I've never been genetically tested for CLL to the best of my knowledge, and I would guess I only have one or two of those fault areas.

Very unusually for CLL both my father and grandfather had CLL so I am a familial case:

ncbi.nlm.nih.gov/pmc/articl...

Interestingly it occurs about 20 years younger each as you go through the generations. Grandfather in 80's father in 60's and I was DX in my 40's so I am a classical case for the unusual familial scenario. Fortunately no children to worry.

Yes you are right that CLL mutates. I've minimal expertise and understanding of that.

I've had digestive issues since being an infant. I was a twin and on the bad advice of a well known book from Dr Spock and doctor's advice to my mother was weaned on formula milk which had a bad effect. That said in 2000 with FODMAP diet (University of Melbourne) I sorted it out, so a real shame to have messed it up with Flucloxacillin taken Sept last year. I guess I could still recover with no interventions.

I see the Australians have banned Flucloxacillin, but the better alternative Dicloxacillin? from the USA is not available in the UK, and the scientific studies aren't good enough to persuade anyone to take action. The snag is most patients taking that antibiotic have comorbidities, so I guess the few bad reactions are blamed on those. I do note I had a course and a half of Fluclox which significantly increases the risk of liver reaction.

Just been and left samples for the initial pancreas tests, but I'm not hopeful. What I have learned is that diagnostic suggestions made by the patient are generally wrong. That said I did guess I had CLL but that was fairly easy in my case. Wait and see then.

It is Easter now so time to think positively.

I'm going to try to ride my bike today, first time since last year. Off road so reasonably safe.

Think I'll make it round the course but expecting a few rough days after.

Best wishes,

Ernest