Slight Escalation.....

[CheddarAddict]

Hi all, hope everyone is 'coping' or seeking an easier way to be well enough.

So I had to have a little bit of surgery New Years Eve, not expected or planned and was 'bridged' under St Thomas's distant eye and all went well.... Don't know what scares you the most, the surgery or risk of bleed or clot... think latter for me to be honest.

Anyhoo back on Belly Stabs for the foreseeable future as it seems I now need to endure 3 or 4 hits of Chemo to finish things off and Warfarin don't get on too well with that apparently..

Anyway point of post is... I have never seen anyone yet say about Chemo AND Hughes or not spotted it anyways... Am I really that screwed up a body that I am even more unusual than APS'd which lets face it is 'special' enough for anyone eh... Has anyone else been through Cancer treatment as well? How was it?

Just to say I am fine enough, it was a 'good' one to get!!! How the hell do you ever expect to have to say that! Body is doing fine, feel usual low levels crap as my blood is only borderline I guess but my head... well that struggles some days... but else all looks good for the future, you never know Chemo may blow the doors off the APS for a few months... will see

Anyway be interested to hear how others got on...

[MaryF Administrator]

Well done you, what a positive, go get attitude! Do make sure as you get your Hughes Syndrome/APS jabs etc back on track that they check your iron, b12 and D, as they need to be good also. ps your name makes me want to raid the fridge immediately! MaryF

[CheddarAddict in reply to MaryF]

Not so addicted at the moment being on Tinz tbh..... hahahhahaa

[Lure2]

Hi CheddarAdict,

I am glad to hear that your operation went well and everything looks good for the future also!

I must say that I have not heard of anyone operated for Cancer with APS but I am not medical trained as you know and I guess others here have done that.

I wish you "well recovery" and please let us hear how it goes for you.

Kerstin

[Still-smiling]

Hi, I had surgery and cancer less than a year ago. Totally agree re bridging do they take into account sitting for 8 hours on hard plastic chair prior to surgery then a couple of hours on the table and then they wanted me to stay in. Escaped as quickly as I could like you worried about clot and being put on a ward at 9 at night not good idea. I had 2 surgeries and felt much safer at home.

Chemo was the best thing ever, lovely oncologist who when I told him how ill I was with aps said he would choose a combination with a chemo drug that his patients with autoimmune diseases find really helped those symptoms. Never had so much fun was able to walk go up and down stairs no stick required was able to go out, pain and fatigue went. So hope you get a good combination.

Annoying part allergic to second chemo drug which was annoying for 3rd and 4 th cycle mainly because junior doctor wouldn't listen ended up with nice chemo burn.

Supposed to have had radiotherapy 5 times a week for 3 weeks but couldn't manage it. Just getting out once a week to go to shop opposite exhausts me. Cancer centre wanted rheumatologist to prescribe the drug so I could have radiotherapy but refused!

I am sure that you are an expert patient the more junior doctors may try and insist you stick to the NICE pathway but hopefully consultants will listen to you.

Cancer doesn't worry me at all 20 years of aps does that to you! Other amazing thing is how everyone suddenly sees you as really ill? Hard to explain that to people who don't get autoimmune.

I am treated at a top London hospital, my consultant haematologist retired 2 years ago and rheumatologists (on the list) just don't get how bad things are and seem to totally forget quality of life and patients having a say. In the past have had a range of drugs including rituximab must be 10 years ago although they say it hasn't been tried here! Also have Factor V, epilepsy caused by aps, B12, folic, vitamin D and other issues.

Good luck with chemo choose the comfortable chair you want and make sure the pump is fully charged so you can go walk about as a lot of the drugs increase risk of clots. Oh and I was on warfarin which just as well as I had to inject GCSF after each chemo cycle for a few days.

[CheddarAddict]

Thank you.... Brilliant, makes sense... LOVE the charged pump nod, will be up and about...

Agreed on the ' Oh you're ill now' bit, get taken seriously now!... I am allowed to be tired at the moment hahahahaha... We all know will be me blood that does me in the end to be sure...

Three drugs needed for me, one may not be possible if PE done damage to my lungs, one of them requires thin blood and anticoagulation to work properly AND can cause clots..... We need anticoagulation to be normal .... There's a bit of talking between Oncologist & St Thomas's to be done to get me blood right first... It has been said that Warfarin will not be best method during.

Thanks

[Still-smiling]

Every case is different. Certainly for my cancer the super oncologist did not go with the normal combination but went for 2 drugs one of which is clinically known to help autoimmune which meant that I could get to the hospital and have chemo. An example of a consultant who looks at the patient not just one pathway. Don't know how much of an expert you are or want to be but if you want you could ask in percentage terms how chemo improves your outcome. That is why I am not overly worried about not having radiotherapy which would only have improved my outcome by 4 -5%. Worst part about chemo is blood tests day or two prior to chemo if like me you are housebound. I insisted I needed more than the couple of days between. Also my hospital did mess up last chemo and hadn't got drugs ready and had to wait hours andthey were totally unworried about the fact I would be very late for my other drugs including anticonvulsants, so if you are on any others take them with you just in case. Seems that most chemo drugs increase the risk of clots so be sensible walk around keep hydrated. I am on a drug for the next 10 years that increases the risk of clots but I keep my INR at 4 -5.

[Still-smiling]

Another thing if like me you go OK what is life going to throw at me next. If you loose your hair it grows back really soft and is totally different. Mine is curly and I laugh because it really looks likes Einsteins, too tired to style or anything so just laugh.

[CheddarAddict]

Yes I am increasingly considering my life to be some sort of parody of The Truman Show where they use me as a science experiment to chuck all sorts of crap at me just to see 'how I get on'.........

Am aware of the potential... Bonuses!!... of Chemo... Now when in your life would you ever ever imagine saying that one!?.. The Doc is well conversed on autoimmune too as well as 25yr in Oncology so I think I am in pretty good hands....

[Hidden]

Bless your heart, your mindset is an inspiration to us all!