update on me

[Pam P]

Hi everyone! Sorry I go MIA so often these days, but i DO think of you all daily. Not great news update for me. PET scan shows a spot on liver, and a node near esophogus, both new. Switching from Abraxane back to Xeloda a chemo I've been on before. Not many chemo options left for me. (Where is the darn Tdm1 ???) More... I had to have a 2nd surgery on my ankle Aug 1 due to an infection which turned out to be MRSA. Then I lost much more strength. I can not transfer from my wheel chair to toilet or bed and can't stand up. The ortho surgeon thinks the sudden weakness may be due to a tumor on the spine. I am having MRI next week. I'm going to get a hospital bed to make that part easier and am hiring home aid help (very costly) to be with me when family can't be. All of this is so depressing to me. I;m losing hope. Love to you all. Pam

[sarah]

Wow you really didn't need the MRSA on top of everything else. Here's hoping the MRI is good and that you get on TDM1 soon. You've beaten it for 10 years so don't give up hope that you can't beat it for another 10.
I am sure there are other people on the site who've been through this and have good ideas of things to ask your doctors about.
hugs and love
sarah

[michka]

Oh Pam. I was hoping you were now in a healing process.
I don't know if there are clinical trials of TDM1 near you but if yes you could try to get into one. There seems to be more sites open. Maybe someone near you on this board can help you. Stay strong Pam. Hugs. Michka

[Jackie07]

Pam,

Thanks for sharing your inner feeling honestly. For some reason, the sayings of Winston Churchill came to my mind: "Never, never, never give up!" "Success is not final, failure is not fatal, it's the courage that counts."

This forrum is full of courageous women and men. You and many of the long-time members certainly have demonstrated your courage, resolve and your humanity.

Come to the forum more often and share with us your progress. Nothing is more encouraging than reading/seeing the updates of a brave fighter/sister.

Know that we all love you and are rooting/praying for you...

[chrisy]

Pam, I've been thinking about you a lot lately, probably because I'm dealing with a leg injury and surgery due to nfection... I kept thinking, "Pam can handle this and more" and you have given me strength.

Sorry to hear your latest information is not what you wanted to hear. Hang in there; don't lose hope.
Chris

[Redwolf8812]

Prayers...

[Lani]

It's strange how loss of mobility and independence can be so much more mood-devastating than the cancer itself can be. I have seen it in people I have visited in the hospital, even those without cancer. Women stop putting on their makeup and brushing their hair when they lie in a hospital bed and fear their lack of mobility will be permanent and cause them to lose their independence and "sovereignty" The day they get out of bed and sit in a chair and then walk....on goes the lipstick, here comes the hairbrush and ...Voila, they are themselves again.

{From those I have visited in hospital it seems men have a different way of dealing with this....they are just a lot less talkative until they figure they will be alright, mobile again and "king of their domain" again}

Just remember your mobility set back may be just that--a setback. Once your
team determines if your weakness is due to disuse atrophy (muscles weaken when not used as much) or a tumor pressing on your spine (which can respond to systemic treatment and/or radiation treatment) they will have an idea of how to treat you best and you may be well on your way to regaining your ability to take care of things better yourself.

Can you ask your doctor to have a physical therapist see you at home? They can give you exercises you can do lying in bed to keep your muscles strong and give helpful hints as to how to maximize your ability to do things yourself and make it easier on those helping you.

It is hard to ask for help, but this is just help to help you keep from needing more help.

I hope this is just a tiny pothole on the way to the TDM1 superhighway.

I just finished attending the ASCO breast conference and Hope Rugo predicted TDM1 would be approved by the end of this year or beginning of next.

Hang in there!!

[NEDenise]

Oh Pam,
I'm so sorry you're having a rough time. But, please don't lose hope! You are such an inspiration to me. I think of you often and remember you by name in my prayers. You've been through so much...and have fought through it all. When things get tough for me, I think of what you've dealt with...and I know it can be done.
Hang in there Pam, TDM-1 is just around the corner for both of us!
I hope you can feel the love I'm sending to you.
Denise

[BonnieR]

Pam, it's understandable to be feeling discouraged, but never give up hope. The others have expressed it very well. Does your community have any free or low cost services available to cancer patients? Sometimes a social worker or your cancer society may have some contacts of people who may be able to come in and offer support.
Above all, keep the faith.

[Mandamoo]

Pam I am so sorry to hear of your latest hurdle and mobility difficulties.
The others have posted good advice. Sending you love.

[LoisLane]

Dear Pam sorry to hear about the increasing challenges you are facing. I feel the ladies here have given you great words of encouragment and hope and love and I want you to know I am sending the same. Pls stay strong I know that is easier said than done but I know you will do this.

[KDR]

Pam,
T-DM1 is right around the corner. Literally. The submission date was August 24 and they can approve at 6- or 10-month mark, but it might even be December. (Yes, I do a lot of research and ask a lot of questions).

Also, I'll share with you that I entered a trial and was not randomized to T-DM1 so I left. IT IS MY LIFE. Just like it's yours. Do what you HAVE to. Keep moving until you are sitting at the table you want to be at. Have no patience for anything less.

I am truly sorry so all you have had to deal with. If I were there, I'd wash your hair for you and put on your make-up. Massage your feet with some nice peppermint cream. i am sending special thoughts your way tonight. I have a lion imprinted on my heart.

Love
Karen

[caya]

Pam - please don't lose hope, it sounds like TDM1 will be available to you very soon - Can your onc. speed up the process for you at all?

You are one brave Warrior Woman - keep your chin up!!

all the best
caya

[yanyan]

Dear pam, please don't lose hope!!! You have been through a lot in 10 years!!! Take a deep breath and move forward ! Sending prayers to you!

[Midwest Alice]

Pam, I alway look for a word from you. Sending a hug and prayers. Alice

[Laurel]

Pam,

I am so sorry to learn of your latest struggles. It all sounds so overwhelming and unfair to be have to contend with MRSA (!) on top of everything else! Now you are facing the additional stress of trying to adjust to a life of less mobility and more dependence, something that is hard for everyone, but especially difficult for a strong willed warrior gal like you.

Years ago I read about how Corrie Ten Boom, the Dutch Holocaust survivor, hid so may Jews escaping Nazi tyranny only to sacrifice herself and her family in the concentration camps upon capture. He elderly father and beloved sister, her entire immediate family, perished in the camps. Corrie survived to tell her story in the books, The Hiding Place, which became a movie, and Tramp For The Lord. She was a vivacious woman who traveled the world telling her story until one day she was stricken with a stroke and left completely paralyzed....silenced. Her assistant recalled Corrie having shared with her that God had told Corrie of her exact date and time of death, which she recorded. That time was years away. How could this busy woman who loved to sing and talk live a life of quiet solitude? Her assistant watched as Corrie, whose mind remained fully intact, spent her last years in quiet prayer and submission to her Lord. She died at the appointed hour and day just as she had shared all those years before.

I have no idea what purpose lay in Corrie Ten Boon's forced "stillness" or whether there ever is a "silver lining" to suffering. I do know that God loves you, Pam, and you are loved and cherished by all of us here at Her2Support.

Praying for TDM1!

Laurel

[Pray]

Dear Pam,

I too am so sorry about these new results. I am praying very hard that this next round comes out better for you. I to believe you are in Gods hands always as we all are. He never gives us more than we can handle. You and so many of the woman here are the strongest woman I have ever been blessed with to know! All of you have had some unbelievable hurdles to jump. I admire you emencely. I believe it was John Wayne who said" Courage is being scared to death and saddleing up anyway!" Which you have done over and over again and in the same token I'm sure it has to take that same courage to slip in that you may be losing hope. You are amazing! I and everyone here are holding onto your hope. Know that you are loved. All the people here have shown us all a steadfast love we all come here for and know we can get it. I do love you sweet woman. Gods blessings to you. You are always in my prayers.

Your friend,

Nancy

[Laurel]

Hey, Pam, dropped in tonight and just wanted you to know that I am thinking of you.

[alicem]

Pam, I wanted you to know that you are in my thoughts and prayers as well. I have always been amazed at your courage. Sending you Cyber Hugs!

[Paula O]

(((((Big hugs))))) and prayers,
Paula

[KsGal]

Im so sorry to hear your news. It's really a tough setback, and you have been fighting so long I know you must be tired. Dont give up...I believe that TDM1 is right around the corner. Know that we are all sending you prayers. ((hugs))

[Dianedack]

so sorry you are having a hard time. You get fed up with all the treatments but hang on in their there is always something new.

I am hoping to get on TDMI trial in Australia next year so hanging on in there.

Love to all thinking of you and praying

Diane
xx

[Pam P]

Hi everyone and thank you for all your advice and support. Hearing from you makes my heart warm with your warm words. Monday I see the orthopedic surgeon re: spine MRI, praying for okay news. Will let you know. Love to all.

[Mary Anne in TX]

Pam, I'll being praying and believing for good news tomorrow. Best wishes for a peaceful day today and tomorrow. Much love, ma