Bruising

[Kiwidi]

So I have heard that ibrutinib should be called ibruisinitib ! I am not on any medication at all!

I am in the ‘wait and watch’ stage but keep getting these bruises on my arms and legs from just touching things. My WBC is 50 and Lymphocyte count around 47. Everything else is normal.

I am a kiwi who is very stoic about health issues and actually quite cynical when I see people talking about their symptoms which may or may not be related to their CLL situation. I guess I am saying that cosmetically I don’t like these manifestations but can live with them If they are the only symptom I have to deal with.

[Kiwidi]

I know that is just my feeling that sometimes ‘mind over matter’ is better! I am a very glass half full kind of person and don’t get me wrong. Most of my time is spent caring for those whose life is much harder than ours.

[Kiwidi]

Yep I reckon my diet has enough vitamin C . I am on a mainly plant based diet but have a steak when I feel Ike I need one😀

[Kiwidi]

OMG that is awful! I have had blood taken with no horrible results. Take care my friend😀

[Kiwidi in reply to Kiwidi]

Did you know that ibrutinib is not funded in NZ ? I think it would be the drug I needed if my condition were to worsen. We are campaigning to get it funded!

[AussieNeil Administrator]

So you are in the situation where your platelet count is in the normal range, you aren't on any treatment for your CLL and you bruise easily? The clotting process is very involved, so there areany factors that could be behind your increased bruising. Are you on any other drugs, particularly blood thinning drugs? Are you taking high quantities of any supplement? Is your diet atypical? Even if non of these apply, you just may have a genetic tendency to bruise.

Neil

[Kiwidi in reply to AussieNeil]

Thank you Neil

I think I have always been an easy bruiser!

Cheers D

[Kiwidi in reply to Kiwidi]

I am definitely not on any meds or supplements!

[Kiwidi]

We have to import it from Bangladesh or there is one pharmacy that supplies it at $2500 a month. It seems to work but who knows if it is genuine or not?

[AdrianUK in reply to Kiwidi]

Maybe the importing pharmacy is able to to run some tests form time time

To check it is what it says in the tin and doesn’t contain anything it shouldn’t. Kinds the job if your drug regulatory boards to check the validity’s of input. In Europe these kinds of imports with a real

Drug patented on the market are not allowed and would be considered smuggling.

[morepork]

Hi Kiwidi

I might have said this before but some of us in NZ (in Wellington at least) are on free Ibrutinib -monotherapy -sourced via Janssen Australia with no end point set down. Maybe there was some deal with the manufacturers that no longer applies. There is also at least one Wellington patient on Acalabrutinb here possibly also due to an exceptional circumstances deal.

But I know not all kiwis are so lucky at present.

[Kiwidi in reply to morepork]

Thanks Morepork

I have heard that if you pay a substantial amount to Janssen you can get it free for a number of years. Is that what you are referring to? I’d love to know what is considered to be an ‘exceptional circumstance’ and who decides if one person’s quality of life is more important than another’s?

[vog292]

I wear "arm protectors" and also gloves (cotton dermatological gloves). Both are available on the internet . There are also "leg protectors". Also "ellbow protectors".

[Kiwidi in reply to vog292]

So what is worse cosmetically the arm protectors or the bruising? My sister here for Christmas and actually comparing our arms there is little difference! I think I come from a family of bruisers😀