ET Side Effects

Just like me got the same MF ,jak2,positive,,E,T and yes night sweats washing machine on even at 2am ,Ì am only on asprin at moment refusing chemo ,as keep thinking why go through more with side effects as thete is no cure so am using fitness as my way of trying to be normal  I run and cycle a lot its my theraphy ,yes do feel tired after and just want to sleep  but rather this tan chemo to scared to go that way well thats how it is I guess ,,,,take care stay strong

Hi Caya,
Thanks for your reply.  How awful about losing your hubby after no time at all... really heartbreaking!  How are you doing with taking just Aspirin?  I'm meant to start Hydroxy, but having thought about it, have decided not to take it at all.  Pity highlander didn't read my message properly as he repeated what I'd said about Interferon as if I had no idea! I've apparently only got 7 years left which has left me angry so to keep getting told that I "look okay!" drives me nuts! Have lost all good feelings...joy, happiness etc.  My passion was weights.  Waiting to hear what I'm told about that!  Probably to do swimming & cycling!  Surely no Doctor should be able to quantify a life plus I was told I could possibly drop dead at any time!!! Outrageous. Just existing at the mo! Do you live alone too?

Take care

x

Hi Yvarna ….. sorry for the confusion. I had read (possibly incorrectly) that Caya may have thought that Interferon Alpha was chemotherapy….. but I made the mistake in putting the reply on the back of your post…. not the one from Caya …… apologies again.

Hi all

Hope you are all enjoying to good weather  ...

I started this thread,  and have a quick update ...  I have been on 10 Hydroxycarbomide capsules per week and am feeling fine, no apparent side effects and I am still working, cycling, walking and rowing. I have set a target for Aug/Sep next year to walk the Camino Frances, just over 800km, will take just over a month of walking 25km per day, with some rest days in between. 

I made a concious descision to live every day to the fullest ... and, so far, so good!

Take care, be tough, and remember, there is always somebody worse off than you ...

Regards

Hi its caya yes it is chemo told by my hemotologist injected in belly not inventing thankyou

Hi Caya I will defer to what your clinical team have said.

The link below about Interferon Alpha is taken from the MPNVoice website.

www.mpnvoice.org.uk/.../Drug_Interferon-Alpha_Sep2020_A5web.pdf

Just keep going and do what makes you happy no one can tell how much you got left they havent got a crystal ball so stay strong and enjoy what you love doing ,what else is there ,No point sitting about wasting time make each day a new day enjoy it .

On my book he gave me its chemo IV injected well they can keep it not have nothing whenbI go I go ,so got to do what makes you happy

Yes Caya you are right in doing what you feel right and comfortable with.

Interesting that in my file of information Interferon Alpha Injections are classed as an immunotherapy treatment.

I'm glad you seem to be coping well.

However, I wonder how old you are (& male!).  Everyone is different in every way, & I am speechless you used such a platitude to someone!!