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Posted

First, I want to thank everyone for all the wonderful support and prayers. I was really in panic mode the other day and it really helped to read everyone's post.

Pat and Peggy, thank you. I so much now understand what you have been through. Your encouragement and understanding really touched me.

I am so lucky that Ann lives here in the Melbourne area. She has been wonderful. It is good to be able to talk to someone and her experience has been like a mirror. She has already filled me in on a local hospice. I am trying to get set up with them now, have to get Moffitt to order it.

Ken is off the trial drug. The tumors in his liver are progressing at a terrible rate. The index tumor was not measured, the report said it merged with 2 others. There are just so many, it seems mostly in his right lobe, but also many smaller ones in the left lobe of the liver.

His BP was very high, 175/105. I am concerned that he may have had a small stroke on Tues. That was the day he was so confused, really out of it, was staggering, and his speech became slurred. However, Weds. morning he was back to "normal". The dr. was not concerned, just said to start taking baby aspirin. I am just worried that he could have a stroke that would destroy what quality of life he has left. Does anyone know of preventive treatment for strokes? Does it seem like he may have had one?

Again, the caring that has been shown has been such a help. I really did not even realize how much I needed it. Thank you so much.

Karen H

Posted

Hi Karen,

I am sorry your news was not better. I was praing Ken could stay in the trial and it was working for him. Have you considered RFA (Radiofrequency Ablation?) It was originially approved by the FDA for tumors in the liver. I don't want to interfere with your decisions, only maybe give you other options to look into...There is a lady there in Florida, Trish. Her husband had the RFA for the liver and is going in next week for the lung.

I am glad Ann is there to help you. She is such a wonderful lady and support. I hate this disease. Where is the cure?

Sending you and Ken prayers on whatever decision you choose...

God Bless, prayers and gentle hugs,

Karen

Posted

Hi Karen,

Actually, I asked the dr. yesterday about RFA. He was highly doubtful but said he would talk to the radiologist. Apparently, there are too many. I am pretty sure that he has too many for CK and they are too big. I had looked into that a year ago when there was only one.

I told the dr. I knew that it would not cure him, but it seemed that if they did the big ones it could at least buy more time. Sometimes it is just hard to accept that there is nothing left, but I am trying.

Karen H

Posted

Karen,

This is not the news I wanted to hear. Prayers continue for a miracle and for peace, comfort and strength during the coming weeks and months.

Glad that you have support close by. We are here for you to lean on. Take care.

Posted

((((((((KAREN)))))))

Boy this news just took the wind right out of my sails. I am so very very sorry Karen. I too looked into RFA for my husband's liver, and was told the same thing about there being too many. I was told they don't do it for livers with more than 12 lesions. I don't have any advice on stroke prevention, but I will keep that in my prayers for you.

Karen, you and Ken are in my prayers always, and I pray that hospice is a blessing and a comfort to you both at this time.

Posted

Hi Karen.

Sad to hear the latest with Ken.

Ask about Plavix. I know it helps to keep the blood from sticking together. I was put on it after a heart attack, but it kind of seems like heart and brains are both affected by plaques that break off.

Will HBP meds help?

Glad you have Annie Roo close by too.

Hang in there, Karen.

Cindi o'h

Posted

oh, sweetie. right about now is when I start to feel so useless to say anything that might you!! just know that my heart is with you and Ken. he's in such loving hands (yours and gods!). please let us know how we can support you.

xoxo

amie

Posted

Saying Lots Of prayers for you. High Blood Pressure meds Metroprolol or Benicar HRT. Just Thoughts. Many prayers

Posted

Karen, so sorry to hear the news about Ken.

Pryaing for a miracle...

I feel so bad I wish I could do something to help...all I can do from here is to send prayers.

Maryanne

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