Please say a prayer for Linda

[al from Canada]

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]

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]

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

[Peggins]

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


Peggy

[janet/FL]

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]

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

[Yorkiegirl]

Al & Linda, My heart goes out to you both. Many, Many prayers are being said.



Vicki

[Diane H]

Sending prayers and hugs and wishing for a quick turn around for Linda, bless you both.

Diane

[Unregistered]

Linda is lucky to have you, Al. Best wishes and prayers to you and she.

[saleboat]

Hi Al--

I'm very sorry to hear what Linda and you have been going through these past few weeks. I am going to trust in your intuition, but I'll keep sending you and Linda wonderful healing vibes from NYC.

Jen

[Shell]

Al and Linda-


our prayers are with you and your family

shell

[jag]

GOD BLESS...YOU AND LINDA....

[jener8er]

So sorry to hear this Al and Linda. I will be thinking of you all and hope things turn around quickly.

{{HUGS}}

[Lolly]

Dear Al, I'm so sorry to hear this. It's must be so frustrating and disheartening to be going in circles with the meds, side effects, more meds, etc. But I know Navelbine is a potent drug, especially in combo with Herceptin, just remember the blood counts take a hit with it. The transfusion should help her start feeling better, one of my chemo buddies had to have them occasionally and they made a big difference for her.
I will be keeping you guys in my thoughts and prayers, and knowing how strong willed BOTH of you are will continue to hold positive thoughts in mind.

<3 Lolly

[sherri]

Dear Al and Linda,

My heart goes out to you both, I think about you all the time and I wish for a fast recovery. I send you positive energy and pray.

Love and hugs,

[jeff]

Al,

I'm beyond sorry to hear that things have been going so poorly for Linda. You must tell me if there is anything I can do-organize local help for you, whaterver...from this distance, that would be at all helpful.

Warmly,
Jeff

[emmasmom]

Al, I am so sorry about all of this. Please know you both are in my prayers. Keep fighting!


Lisa

[Cathya]

Al;

I am so sorry to hear about Linda's current challenges....that goodness she does have you to handle everything! I also live in Ontario and if there is anything I can do please let me know. Will be praying for you both.

Cathy

[lexigirl]

Al,

We are saying prayers for Linda to have strength.

Love and Prayers,
Lexi

[CLTann]

I want to add my thoughts and prayer, along with others, to Al and Linda. In my short period of time in this forum, I know that you two are outstanding people. I know you will do wonders to turn the tide.


Ann

[Becky]

Al


I am always thinking of Linda and you. You are in my thoughts and prayers.


Becky

[sherri]

Al,

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

[CherylS]

We celebrate. He is Risen! Because of this we all have hope. May the God of all peace comfort you in these most difficult of times and use them to demonstrate to you His deep, deep love for you and to draw you nearer to Himself. Praying for you,

[Christine MH-UK]

Dear Al,

I will keep both you and Linda in my prayers.

With best wishes,

Christine

[sherri]

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,

[michele u]

Al, God is with both of you through every moment. He shows himself in the face of suffering. I will say a extra prayer, for BOTH of you.

[sassy]

"Be full of strength and courage. Do not be terrified; do not be discouraged. I will be with you wherever you go." Joshua 1:9

Sassy
________
2SexyAngels live (http://camslivesexy.com/cam/2SexyAngels)

[Liz J.]

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.

[Lisa]

Al,

What happened with the WBR? Either I've forgotten (a side effect of my WBR) or I haven't kept up. She sounds like she's in misery. I'm so, so sorry to hear this. But, you know what, Al, I trust your intuition!

Love and light to you both,

Lisa

[Sandy H]

Oh Al and Linda my heart goes out to you both. You both have been on my mind for a while and I have been worried that things have not been going well with you. Usually, if we do not hear on this board it means a full plate. Yes, she can rally so don't give up hope. We will pray that the doctors will have wisdon from above to pick the right drugs for her. Steriods are called miracles drugs and some people love them not knowing the serious side effects. I am scared of them and will not use them unless I have to. Linda is so fortunate to have you by her side. I will continue to pray for you both and I will ask my Christian friends to pray as well. Try to enjoy this Easter with the family. Also I had a long talk with Devin in San Antionio and liked her very much. I have her card in my file. Sending you both a big hug, Keep us posted, Sandy

[Tami]

Al and Linda I am sending you hope, prayers and tons of positive energy your way! Hang in there and fight the fight. t.

[chrislmelb]

Al,my thoughts are with you and Linda. Your posts have been missed.
Take care
Christine

[Sherryg683]

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]

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]

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]

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

Best wishes to you.

Bjj

[eric]

Al,

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

Eric

[lisahammo]

Al and Linda

We all feel like we know you so well. I am so sad to read your post, and will be thinking of you both. I don't normally pray, but maybe tonight I will say a special prayer just for you both.

Take care.

Love Lisa

[kk1]

al and linda;

like everyone else on this board my prayers are with you two.

kk1

[Kim in CA]

Dearest Al and Linda,


I just want to send my encouragement and support to the two of you. I have twice been on death's doorstep and I know how very, very hard it was for my husband. I know it is nothing short of a miracle that I am still here. I am not a member of any church, but I consider myself a very spiritual person and I do firmly believe in the power of prayer. I have folks that I have never even met that have prayed for me continuously since I was diagnosed in 1997. You have just got to keep the faith at this time and know that we are praying for you and Linda. It seems like we are really being tested right now with so many of our Her2 folks having set backs at this time. Please hang in there and keep us posted if there is some way that we can help.

Love, Kim

[Julie2]

Al and Linda,

You are in my thoughts. I am hoping evrerything is going to be fine and Linda will be back to normal.

Julie

[Unregistered]

I have come to the conclusion after reading all the posts , that we are a bunch of tough old broads. Nothing can stop us. Forgive the tough old broad part if you aren't a certain age. i will be damned if this is going to kill me. I'm going to go fat and happy. My thoughts and prayers are with you both.

[AlaskaAngel]

Al, I don't know Linda except through you, but there are some people that are truly the best folks on earth and you two really shine together. My thoughts are with you both.

AlaskaAngel

[Andi]

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]

Al and LInda


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

[Sandy H]

Al and Linda I have been watching for your posting. You both have been on my mind daily and not hearing from you made me worried that things were not going well for you. There is still time that Linda can turn around and rally through this. You have been such an advocate for her. She is fortunate to have you by her side as an angel. She will feel better after the blood transfusion and the navelbine is certainly, a milder chemo and yet so many have made it to NED on it. You have been and will continue to be in my prayers. I will ask my Christian friends to pray as well. Will be watching for an update. Now, try to enjoy the Easter with family. Sending you both a big hug. Sandy

[Bev]

Hi, about the lip lesions. Look up Stephen Johnson's(sp?) syndrome. It's caused from an allergic reaction to drugs, antibiotics in my husband's case. The lesions form around usually moist areas, eyes, mouth etc. They look horrific. He was hospitalized in the isolation ward for 2 weeks, in the 80's, as the docs didn't realize what it was. They were thinking HIV or plague. Just a shot in the dark though, as a weakened immune system causing all these problems is more likely. Ditto on the thoughts and prayers. BB

[Lyn]

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