Progress and chemo cycle 3

[Wellsie]

Yesterday I saw my rheumatologist. It was a bitter sweet appointment, as he has become my lead doctor, and he told me yesterday it will be the last i see of him for a while while he has treatment for prostrate cancer. What was nice was the way he shook my hand at the end of my appointment and said he'll see me in 6 months or so when we're both better. A very warming and real human touch.

He confirmed that they think Polyarteritis Nodosa (PAN) is now active in my organs, having made a mess of most of my peripheral nerves in every limb. My recent stay in Worcester Royal for a PR bleed has shown that the disease is now active in my kidneys, bowel and testicles (ouch, seriously. PAN can make them very tender to the touch).

As a consequence, my care team is going to expand and I am getting consults to urology, nephrology and radiology. A batch of new tests are being lined up as follows:

1. Arteriography of my heart, liver, lungs, kidneys, GI tract and bowel to identify the extent of PAN inside me. PAN itself causes partial aneurisms on blood vessel walls, causing the blood vessel to devel a nodule (nodosa).

2. Ultrasound studies of my GU system to study blood and urine flow, bladder control, nerve and blood supply.

3. A testicular biopsy, to determine the level of damage and involvement to the testicle.

4. Further NVC and EMG studies to determine the current level of damage to my nervous system. So far it has only effected my peripheral nerves, but now new symptoms (regular sweating flushes, unable to regulate body temperature, inability to finish off a wee properly) suggest that the peripheral nervous system is now involved.

I also had my 3rd dose of chemo and methyl pred yesterday that left me feeling pretty yack this morning. A few coffees, ondanestron, omeprazale, and then the other 17 tablets I take everymorning soon sorted that out.

So all in all, a day of mixed news. However, I have been assured that the ONLY treatment option I have with PAN is cyclophosphamide, so I guess I must be on the right stuff. My prognosis without it may only be 18 - 24 months at best.

Apparently I am only the second patient UHCW have treated with PAN in 14 years. I didn't ask if they were successful or not!

[John_Mills Volunteer]

Hi Wellsie,

Did they say if your PAN was virus-associated or not? It is important to distinguish between the two. (You can PM me with the reply if you prefer).

It's always worrying to learn you are one of only a very few patients being treated for a disease as it means they have little direct experience and evidence shows that outcomes are better when patients are treated by doctors with experience - HOWEVER there is no problem about getting advice on your case from top experts - if they ask for it!

John

[Wellsie]

No my PAN is not virus related as far as I know and my Hep B results are all negative. I am also ANCA negative too, ruling out MPA.

[JennyH-M]

So sorry to hear of your problems. Can't offer any help or useful advise, but wish you all the strength you need to get through. Take care.