More news from Djinnie! Good news!

brea588 said:

wow

What a stromg lady and yet still encouraging others.  Brought tears to my eyes.  I pray for her every day.  Thanks for posting it JO JO.

Thank you for the news! And all our love to Djinnie!

Jan4you said:

Yes, I too had a wonderful

Yes, I too had a wonderful message from DJ today, very early. In my emaill, I old her not to respond, but to save her energy, yet she did.

STILL as lovely, generous, giving her kindness and care to all. She is grateful for all of us on this site. She is hoping to get on one day... but it is now hard for her.

To me, she is resigned and making the most of each moment she has. Seems she has only a window of time to correspond as once her meds kick in she's out for awhile.

As the Tim McGraw song says, we should all live like we are dying~

Hugs to you all!!!

Jan

 

Does anyone have news from our beloved DJ? I think of her almost everyday, waiting for good news and her coming back to this board soon.

Jojo61 said:

And the good news continues!

Hi everyone,

Our Djinnie is a pillar of strength. She had an appointment with her Dr. Laguerre and had good news....here is an excerpt from her email (describing her visit to Dr. Laguerre):

"I also got on very well yesterday JoJo. I was very worried about getting there of being constantly sick, the mornings are so hard for me. Anyway I was up at 5.00 am trying to get everything to settle down, it was tough. My friend Jackie drove up from Vannes to come with us, it saved me struggling with understanding the full conversation, as she speaks perfect French. Well my blood work was pretty good, and my Thyroid levels are in normal range. I had a full physical, along with checking the lymph and lungs. My lungs are completely clear, the breath being completely unlabored. She told me I am doing very well, things have changed around completely. The stay in hospital for two weeks just gave me the energy and the right pain relief to fight with more strength and  determination. Dr Laguerre  was very pleased, my immune system is fighting back at last and I stand a good chance now. That is the best thing I could possibly hear! 

 

I get my scan in 2 months to check on the Infinitor, also as a precaution I am having an MRI to check that I don't have a brain lesion because of the black outs, considering they started around the time I started the meds they are are more likely to be connected to those, best to play safe. We are going to start to reducing the morphine and steroids now too, as Dr Laguerre  doesn't think  I need the same level of meds any more, what wonderful news. I have gone from little hope to living much longer to a chance of a future. How things can change in such a short space of time I am overwhelmed."

 

Terrific news that I know all of you here will be happy to know!

 

Big hugs

 

Jojo

 

this has made me so very happy.  I just love this woman and her strength and encouragement.   Just made my day!  I keep praying for her and for even more great news.  What an awesome God we have!!!  

Jojo61 said:

And the good news continues!

Hi everyone,

Our Djinnie is a pillar of strength. She had an appointment with her Dr. Laguerre and had good news....here is an excerpt from her email (describing her visit to Dr. Laguerre):

"I also got on very well yesterday JoJo. I was very worried about getting there of being constantly sick, the mornings are so hard for me. Anyway I was up at 5.00 am trying to get everything to settle down, it was tough. My friend Jackie drove up from Vannes to come with us, it saved me struggling with understanding the full conversation, as she speaks perfect French. Well my blood work was pretty good, and my Thyroid levels are in normal range. I had a full physical, along with checking the lymph and lungs. My lungs are completely clear, the breath being completely unlabored. She told me I am doing very well, things have changed around completely. The stay in hospital for two weeks just gave me the energy and the right pain relief to fight with more strength and  determination. Dr Laguerre  was very pleased, my immune system is fighting back at last and I stand a good chance now. That is the best thing I could possibly hear! 

 

I get my scan in 2 months to check on the Infinitor, also as a precaution I am having an MRI to check that I don't have a brain lesion because of the black outs, considering they started around the time I started the meds they are are more likely to be connected to those, best to play safe. We are going to start to reducing the morphine and steroids now too, as Dr Laguerre  doesn't think  I need the same level of meds any more, what wonderful news. I have gone from little hope to living much longer to a chance of a future. How things can change in such a short space of time I am overwhelmed."

 

Terrific news that I know all of you here will be happy to know!

 

Big hugs

 

Jojo

 

this is truly amazing news and thank you, JoJo for sharing it; having clear lungs when she was nearly suffocated is about as close to a miracle as I have heard.

I am expecting her to return to this forum at the rate she is progressing.

Please let her know how much she continues to be in my thoughts.

Sarah

Phredswife said:

Thank goodness!!

This is the best news!! Thankyou Jojo. Please send my love when you next talk to her

 Hugs Melissa

Incredibly great news! Thank you for postingthis, and our regards and best wishes to Djinnie!

Jojo, thank you for sharing this wonderful news. I am so happy for Djinnie and also amazed. Her story reminds us that our dire situations can improve, that we should never tire of seeking better doctors & facilities, that hope lives. And where hope lives, life thrives. How thoroughly thrilled Djinnie must be! I am so so very happy for her.

Wow!!

Thank you Jojo and especially

Thank You God!

Arleen

Jojo61 said:

Djinnie sends her thanks and good wishes

Djinnie asked me to convey her gratitude for the good wishes and returns those good wishes to everyone. She is still struggling with the morphine. Even though they are reducing the amounts she is vomiting an endless amount. And yet she bounces back. An amazing woman.

I know everyone here is still saying their prayers for her and sending their good thoughts her way...our wonderful group of lovely people. Thank you. I know that this is helping her.

Big hugs

Jojo

 

JoJo.  In your communications with Djinnie suggest that she discuss changing her medication from Morphine to Fentanyl (it's a 3-day patch). She may be surprised by the difference.

There are several other opiates as well.  Even though they all target the same receptors the response and side effects are different.

I got no relief from Morphine but Fentanyl is working wonders...

Best regards,

-Neil

Jan4you said:

Neil, good to SEE you! Glad

Neil, good to SEE you! Glad you posted.

Just recently communicated with DJinnie and she says the morphine is working, but she shakes as part of the side effects. I believe its used to assist in the coughing she was having plus her other pains. Actually it assists in keeping the airways open for hospice patients. But makes her sleep more.

Sometimes she reads the posts on here, mentioning this site touches her very emotionally.

Neil, she is concerned for you. So know that she is thinking of you.

Mostly, she remains the ever-giving, loving DJinnie!

Gentle Hugs, Jan

OH and DJinnie is looking into CBD oil to help with pain.

Jojo61 said:

Neil, I have been pushing for

Neil, I have been pushing for her to change from morphine to something else, but she said that they said that morphine is the only one. I don't if it is because she is in France or not - as Jan says there may be many other factors for that reasoning. However, I wish they would at least giving it a try. Throwing up all the time is no picnic, plus that will affect her immune system and nutritional absorption. It must be very frustrating.

The 2 times I was on morphine, they had no effect on me whatsoever. At least her pain is managed with this. I am glad Fentanyl is working so well for you!

Hugs

Jojo

Hi JoJo and Jan,

Thanks for the follow up with Djinnie.

I had my latest CT-scan this past Thursday.  For the very first time - ever since my lymph nodes became active - the scan showed they were stable.  This is rather amazing as every other scan had shown growth of about 2cm per visit.

Since my liver mets have been controlled by Afinitor I am now totally stable - although my tumors are enormous.

Best wishes,

-Neil