Djinnie, how are you?

I know, we love you DJinnie and think of you often.

YOU are missed..

Gentle hugs, Jan

Septemberzoe said:

thinking of you often

thinking of you often djinnie....thank you for all of the kind words.....hoping the best for you

Thinking of you all the time and praying that the med does its job quickly. xoxo

Djinnie,

I echo all the others, praying for you, thinking of you often, you are missed.

With Love,

Arleen

hydrangea said:

Djinnie

Djinnie,

You have been in my thoughts and prayers.  You are missed so very much.  You've always managed to lift others spirits on this

site and my wish is to do the same for you.  Please know how much you are loved.  May your heart be warmed knowing how much

you mean to others.

Much Love,

Diane

 

 

Hi there, 

I really don't know what to say other than thank you for your lovely supportive comments. Things have been a little hairy lately, so I have not been reading the posts.

As an update/It seems Afinitor and I are not very compatible. It can cause coughing and unfortunately for me I already have that problem. However with the Afinitor I am coughing 24/7, it's not doing my heart or lungs much good and affecting my quality of life. After a recent scan it was decided that I should continue with the Afinitor, along side doses of codeine and morphine. The result of which was to spend most of the time comatose and the more lucid moments coughing, brilliant solution!!

So I made a unanimous decision to stop Afinitor and fly on a wing and a prayer, until such time at least they come up with a better solution. If Afinitor is my last med on offer there may be no solution, but when push comes to shove often another door will open. Living in hope anyway!

Thanks again for your support, love you:)

Djinnie x

Djinnie said:

Sorry for such a late response!

Hi there, 

I really don't know what to say other than thank you for your lovely supportive comments. Things have been a little hairy lately, so I have not been reading the posts.

As an update/It seems Afinitor and I are not very compatible. It can cause coughing and unfortunately for me I already have that problem. However with the Afinitor I am coughing 24/7, it's not doing my heart or lungs much good and affecting my quality of life. After a recent scan it was decided that I should continue with the Afinitor, along side doses of codeine and morphine. The result of which was to spend most of the time comatose and the more lucid moments coughing, brilliant solution!!

So I made a unanimous decision to stop Afinitor and fly on a wing and a prayer, until such time at least they come up with a better solution. If Afinitor is my last med on offer there may be no solution, but when push comes to shove often another door will open. Living in hope anyway!

Thanks again for your support, love you:)

 

Djinnie x

Djinnie.  Did they do a chest X-Ray to determine if your cough might be due to pneumonitis?  It's a common side effect - I am currently in treatment myself.

If not, pneumonitis is a serious and potentially deadly side effect of taking Afinitor (and all anti-PD1/PDL1 immune drugs).  Demand an X-Ray to rule it out.

I hope you feel better real soon. If Afinitor caused pneumonitis you will need to go on steroids (prednisone) ASAP.

Footstomper said:

Great to hear from you, sorry

Great to hear from you, sorry youre not feeling better

So wonderful to have you check in with us but so sorry to hear about Afinitor not cooperating with your body. Neil's suggestion is very good; do get an x-ray. And I really hope there's an alternative to Afinitor because having it make your cough worse is not doing you any favors Feel better xxoo

Allochka said:

Hugs to you. Lot's of hugs...

Hugs to you. Lot's of hugs...

YAAAY!  Good you took the time to check in, Djinnie! WE sure have missed hearing from you!

I am sorry for ALL you are enduring and I pray for you to receive some relief!

Tell your family I am thinking and praying for you all!

Gentle hugs, Jan

Djinnie said:

Sorry for such a late response!

Hi there, 

I really don't know what to say other than thank you for your lovely supportive comments. Things have been a little hairy lately, so I have not been reading the posts.

As an update/It seems Afinitor and I are not very compatible. It can cause coughing and unfortunately for me I already have that problem. However with the Afinitor I am coughing 24/7, it's not doing my heart or lungs much good and affecting my quality of life. After a recent scan it was decided that I should continue with the Afinitor, along side doses of codeine and morphine. The result of which was to spend most of the time comatose and the more lucid moments coughing, brilliant solution!!

So I made a unanimous decision to stop Afinitor and fly on a wing and a prayer, until such time at least they come up with a better solution. If Afinitor is my last med on offer there may be no solution, but when push comes to shove often another door will open. Living in hope anyway!

Thanks again for your support, love you:)

 

Djinnie x

I hope some of the meds will help you.  THE prednisone should help.  Have they considered reducing the dose of codeine and morphine?  That may help some.  Im here if you need me. You can reach me.  Praying for you.  I could have given a little update but didnt know idf you wanted me too.  So i kept quiet.LOL  In my prayers

firedude21 said:

Wishing you the best

Djinnie -

You have done so much for so many,we wish the best for you.

 

firedude21

We are all wishing the best for you, Djinnie. You are in our thoughts, in our hearts, and in our prayers.

Big Hugs

Jojo

I am alive said:

So great to hear from you!

I was so happy you wrote in.Good to know you are hanging strong. Let us know if your cough improves after stopping Affinitor. This is such a wacky disease, anything is possible, so I am hoping your drug-free status helps your body to relax and go into stasis a bit. If only we could wish these mets away.  Sending love.

Thanks everyone for your support, you're a team in a million.

I haven't started back on the Afinitor as yet, I am waiting on some morphine patches at the moment. The idea seems to be to take plenty of opiates to shut the cough down and then I can continue on Afinitor. The only time I like feeling woozy is when I'm looking at an empty bottle of a lush red, so my immediate reaction to this was no way! But my husband feels I should give it a go, so I agreed so long as I have patches. This will give me the ability to remove it if it's all too much. Along with these I will be on codeine and stronger anti sickness. My Oncologist tells me that my body will adjust after a few days, if that is not the case then I will be heading straight back to the bottles of lush red.

Hey Foxie thanks for the offer, I warn you I am listing badly to port lately though!!

love

Djinnie x