Please say a prayer for Linda

al from Canada · 04-13-2006, 10:47 PM

Hello everyone. I'm back for one post anyways.

Linda has been slowly going dowwnhill the past 2 weeks. I have been at the hospital with her 4 times in 2 weeks, as well as endless phone calls; about her fatigue, tarceva rash, (which none one really believes that's what it is). her not eating, sleeping endlessly etc. The rash has been unbelievable, like 4 cases of chicken pox all in one, around her lips so bad she csn't open her mouth to eat. Blood all over the pillow sheets every morning from bleeding lips. She has also developed all these opportunistic infections like pink eye, trush in her mouth, lip infections. Everytime something comes up, back to the hospital and another medicine! Chasing your tail is one phrase that comes to mind but still understates the past 2 weeks.

Things that I knew but have re-learned: extensive steriod use comprimizes your immune system, WBR is absolutely brutal, Tarceva does cause a rash but very severe in some cases. The wonderful Dr. Devon Webster called us the other night; right out of the blue just to see how Linda was doing. That my friends, is a lady so wonderful and committed to our cause, there aren't enough words to describe her.

Linda's test results: because of the WBR treatment, therefore no chemo, her liver mets took off AGAIN. So while she was recovering from WBR she was getting sicker from the liver mets. Switched to navelbine; a great drug as tonight's liver counts were the best in 4 months. We know it's not the liver mets. She is back on decatron, as if she gets better, it will be because of brain swelling going down. If that's the case, at least we will know what we are dealing with. Her hemoglobin is way down, which would cause fatigue. she is very dehydrated, has had 2 litres of fluids so far. They have put her on anti-biotics, eyedrops, morphine, gravol, neupogen, decatron....and I know I've missed something. Oh yes, she got her herceptin 1 week ago. A blood transfusion is scheduled for tomorrow.

The real kicker is, and those on the board who know me should appreciate this; no matter how diligent, how well read, how many second and third opinions, space-age drugs, due diligence........... somehow this evil disease can stil turn around on you and bite you in the ass!

Also, to Lyn, Lisa, hope, Tom's mom and all the others....I am truly sorry that I havn't been able to contribute to finding solutions to your personal struggles and it pains me to read your posts.

Anyway, I hope my (positive) intuition is right about Linda and she will once again rally like she always has, as she is one of formidable inner strength; that which would shame the strongest of men and yet could only be matched by my survivor friends here.

I'll try to check-in tomorrow (Friday) for an update.

Al

RhondaH · 04-14-2006, 02:23 AM

and are SO sorry to hear of Linda. YOU as with all the others have LOTS of prayers. You and Linda take care and stay strong.

Rhonda

Tracy · 04-14-2006, 04:09 AM

Linda will be in my prayers, I pray for all of us daily.

Peggins · 04-14-2006, 04:41 AM

A prayer has been said and will be repeated and repeated.

Peggy

janet/FL · 04-14-2006, 05:58 AM

Al writes:
"like 4 cases of chicken pox all in one, around her lips so bad she csn't open her mouth to eat. . She has also developed all these opportunistic infections like pink eye, trush in her mouth, lip infections--"
Janet
Writes
I wonder if Valtrex would help? Could she have shingles or other herpes infection? I had shingels in the eye and nose and the Valtez got rid of it--but now I am back on a small dose just to keep it from returning. The lesions around the mouth made me think of it.
Wishing you two the best with hugs and prayers,
Janet

Sheila · 04-14-2006, 05:59 AM

Al & Linda
Keeping you both in my prayers and thoughts that everyday will show improvement and healing.

sherri · 04-14-2006, 02:25 PM

Al,

Someone who had this kind of rash told me, this cream cleared everything in no time.
Take care,

sherri · 04-14-2006, 03:41 PM

Al,
Please contact Dr. Phil Berman, we met him at Cure Conference in San Diego. He has advanced lung cancer and using Tarceva for a long time. Contact him, I'm sure he can give you some advice. This is his website: http://berman.redtoenail.org/
The most important thing is that this drug works.
Best of luck to you and Linda,

Liz J. · 04-14-2006, 05:29 PM

Dear Al,

I have read many of your posts and I am very saddened by the heartache you are now going through. Please know that, like many others, I will be praying for Linda's recovery and for God to continue to give you the strength to carry on in your caring for her. As hard as this is you must also make sure you try to take some care of yourself. That is not being selfish. She needs you and you have to stay as well as you can to help her. My thoughts and prayers are with you both.

Sincerely,

Liz J.

Sherryg683 · 04-14-2006, 07:39 PM

I will keep Linda in my prayers. I am so sorry you are having to go through all this. I pray to God every night to give the Doctors the wisdom to one day cure this damned disease...sherryg683

jsattaw · 04-14-2006, 08:22 PM

My thoughts and prayers are with you too. While I don't post much, I so appreciate your knowledge and will be praying that the doctors find the perfect combination of treatments to help Linda rally. Take care of yourself too -- Linda is so lucky to have you.

Jill

TriciaK · 04-14-2006, 08:55 PM

I have just been able to read your post, Al, and want to add my prayers and thoughts and hopes to all the others. You and Linda are such an inspiration to all of us here, and we truly love and pray for you both. I know you will tell Linda how we feel. Please give her a tender hug from all of us. I know how hard it is for you to stand by with all this going on, but you are her strength and it is such a blessing that you are there for her. Love, Tricia

bjj · 04-15-2006, 03:24 AM

I just wanted to say I am thinking of you both.

Best wishes to you.

Bjj

eric · 04-15-2006, 05:03 AM

Al,

I'm so sorry that you and Linda have to go through this. My thoughts and prayers are with you.

Eric

Andi · 04-15-2006, 11:29 AM

Al & Linda - I always look forward to your posts, I feel like I know you. I am sorry to hear that you have hit a rough patch, stay strong and my prayers are with you.

snoopy · 04-15-2006, 11:33 AM

Al and LInda

I reall don't know what to say except my thoughts and prayers are with you and your family.

Lyn · 04-17-2006, 01:09 AM

THANK YOU, and my prayers and thoughts are with you, one thing I do know is Steroids do give you thrush in the mouth and make you so ill you don't want to get off the pillow, as well as make your muscles weak, so look up on overdosing on steroids and see how many of the other side affects are from it, I am back down to 1 from 4x4 and I have got another round of thrush in the mouth, 3rd time now and with an ulcer on my tongue which looks soooo suspect as well as bleeding from the nose, another bout of staph from the hospital environment, I covered every scratch I had with a band aid but didn't come out without something. So ask them to do some swabs and see how much staph infection is present.

Prayers love & hugs Lyn