Deep breath......: Little update just... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Deep breath......

CheddarAddict profile image
9 Replies

Little update just incase anyone was remotely interested..

As part of the treatment for type and as there are signs it travelled a little as it can albeit too small to see so my Chemo starts tomorrow, delayed by a good few weeks while they check out risk/interactions with APS & lungs (one of drugs of choice are not 'kind' to lungs) and fortunately as there was no urgent need all things have been well considered.

So it's 4 cycles to mop up, my age has also affected treatment slightly but it's still only roughly 3 months and I'll be clear I hope. Ready for Summer

I won't deny I am absolutely crapping myself.. I can just about handle Big C, it's just one of those things with the Life Hand I was dealt, can mentally handle the Chemo, have read and learnt and understand it all fully, simples enough but it's how my blood is going to be with it all that scares me... when the ol body is being chemically nuked... Don't know how many Hughes sufferers have ever had Cancer as well, then add in the vast range of types and treatments there can't be many of a rare ol group anyways... Docs don't seem too phased by it so I am running on their confidence.

Interesting thing will be to see if the temporary resets on my immune system plays any with the APS & psoriasis and maybe... just maybe.. I may actually feel BETTER for a bit... Hahaha Get all the potential side effect symptoms of Chemo anyways as bolt ons with Hughes.. may reduce them a little...

Anyways I have spotted a nice fetching hat in Red with HSF logo on so will be ordering that in the morning.....

See you all the other side.

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9 Replies
MaryF profile image
MaryFAdministrator

Wishing you all the best with your new difficult venture, I hope it is not too bad for your, please let us know how it is going, fingers are crossed for you. MaryF

suefessey profile image
suefessey

I hope all goes well for you, I will say a prayer , take care.x

SueLovett profile image
SueLovett

Will be thinking of you xxx

Once again, attitude is everything. God bless and you're in my prayers.

Nanny23 profile image
Nanny23

Hope you do well with chemo. I had breast cancer in both breasts in 2003. Had chemo and double mastectomy. Have been tested recently for Hughes and anticardiolipin came positive. My sister has it so I was tested. My g p knows nothing about it so need a dr. Familiar with disease. I was treated for cancer at Sloan Kettering in New York. Tolerated chemo ok worked while on it. One chemo drug I was allergic to so had to stay longer on the other. What type cancer do you have?? I wish you well and hope treatment goes well for you. Lynn

GinaD profile image
GinaD

Good luck. I will, as my Quaker friend says, " Hold you in the light."

Gina

Cwoods profile image
Cwoods

Praying for you wish you all the best

CheddarAddict profile image
CheddarAddict

Thank you all for your thoughts... it has helped immensely as these afflictions just make you feel so insular and lonely when you really are not.

It feels like a strange 'Club' you would never chose to join down there, everyone being treated just seems to look at you with an almost odd but beautiful knowing, caring look... almost as if to subconsciously say 'we know'... Nurse was brilliant, requested Comedy Wigs for Cycle 2

Well feel surprisingly OK today, me legs are not stiff so no penguin impressions coming down the stairs this morning BUT not kidding myself as I know this is a building crescendo of body nuking then recovery...

Right Day 2..... Lets Have it!

Ozchick profile image
Ozchick

Best of luck with it all.

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