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View Full Version : We are home, confused, results of scans!!!


Mackey Mouse
02-16-2007, 03:56 PM
I do not know where to begin so I will just blurt it out. We had bloodwork done, scans, and doctor's appt today at MGH. Our Doctor said well I have good and bad news....he always says that, and I was expecting him to say it is in his lungs, it is in his liver, but what he did say was that it was no where other than the original node in the clavicle area. It was a little bigger, but he said that Tom's cancer is not textbook...he said Tom is in a 1%. Wow!!!!

Let me back up a bit, Tom's original diagnosis was ampullary carcinoma...since that is rare it does not have its own category so it gets lumped in with Pancreatic....the treatment is the same as it is so rare....so hence the ******* procedure, chemo and radiation, etc. Then we were what we thought free....but usually that means floating metases....we had the reoccurence in the clavicle area.....so more chemo.. gemcitabine. That was really kicking the heck out of his immune system, bone marrow not good, red blood cells, it was doing a job on him....

Now we go in for this scan... the oncologist is expecting to see this cancer everywhere, that is the textbook remark. it is no where other than that node...which is a teeny bit bigger, but not a big deal.

Now we have 4 options, take a chemo holiday, as chemo really does not work on this cancer when it reoccurs, so we were just throwing the chemo at it and making Tom weaker and weaker, try a new chemo which sometimes causes numbness in the extremities....which will probably not work as they usually do not, try a clinical trial, but then who knows what you are getting....or the last option, (which I am going to push for) is remove this node and wait and see what happens taking the chemo holiday..

I asked the oncologist if Tom was his Dad and sitting before him with this questioning result what would he do....He said he would take the chemo holiday, live our lives, and then scan again in three months and see where we are... In the meantime, he is calling our surgeon, who we love, to see if he would be willing to take this node out. Seems it is behind the clavicle and a tricky place to get to, but that is what I am pushing for. One node, get it out of there..

So...bottom line, no chemo for a while, build him up, try to get that node out of there, and more prayers. When the oncologist said I am at a loss here as this is not textbook and since it is not, we cannot treat as we would if it had followed the normal course of things.....I thought in my head, if you had the amount of people praying for you that my husband has, no wonder it is not going anywhere... Things can change at any time, but right now I am taking this as a blessing and hoping to get that node removed..

Thanks for all the prayers, you have no idea what they mean to us..

WDWLVR
02-16-2007, 04:06 PM
Well Marsha you always knew Tom was special - here is the proof!

I think the plan you are following is a good one. We'll keep praying and you and Tom keep on living life to the fullest!

:grouphug:

Saphire
02-16-2007, 04:17 PM
I have been waiting to hear from you, Marsha, and am so pleased to hear this recent news! I have been praying so hard for you and Tom, and will continue to do so! I thank God for this good news! I will pray for Tom to rebuild his strength, that the surgery goes well to remove that node, and that Tom continues in this direction of healing. Hugs to both of you! :goodvibes

WebmasterKathy
02-16-2007, 04:23 PM
This is wonderful, amazing, terrific news, Marsha!!

Hugs to you and Tommy. A chemo holiday sounds like the best vacation you could possibly dream of right now.

May he continue to get stronger and stronger, and back to his old self. :hug:

Hygiene99
02-16-2007, 04:31 PM
So glad to hear that you have some sun shining on the two of you!!Big hugs, go celebrate tonight!! ~~ Jenn and Peter

annrae
02-16-2007, 04:48 PM
I think the course you are following is the right way to move ahead. I would say the majority of the news was "good." Enjoy yourselves, book the 5 day cruise and have a great weekend. Barb

safetymom
02-16-2007, 06:34 PM
Marsha, it sounds like you got some great news. I like the plan of action you are taking. I am praying for both of you.

minkydog
02-16-2007, 07:21 PM
Wow, that sounds like a great plan. So glad you got mostly good news.:thumbsup2

NHAnn
02-16-2007, 11:55 PM
Marsha..((HUGS)) :thumbsup2
I've been very busy and checking the board quickly off and on the last few days looking for your news.

I agree with your thoughts wholeheartedly.....and especially your feeling that the doctors don't know how much prayer is being directed to Tom ;)...and I do think I have an inkling of how much the prayers mean to you :teeth: with my Avery being on the receiving end of such blessings too!!
I am so happy for you both....
I am keeping Tommy in my prayers and wishing you both joyful days on your "Chemo holiday". :hug:

j's m
02-17-2007, 08:45 AM
Great news Marsha. My prayers will continue for you and your husband.

Does a chemo holiday also mean another holiday to WDW? Maybe that's what made him better. Cure by Mickey.

:grouphug:

Mackey Mouse
02-17-2007, 08:58 AM
I would love to go to see Mickey again, but here is what we are thinking....we are giving it a few days though...

We need to see Italy... we need to see Ireland.. who knows what tomorrow will bring, but these two things are on our list.. Do not be surprised if I say we are flying out to either of these places, Tom's family is from Ireland, wouldn't that be nice to see.. mine are from Italy, and wouldn't I love to see that.. The only problem is that it might be cold there so it is holding us back, not sure what we will do, but we would love to go somewhere warm and get out of all this cold...

JunieJay
02-17-2007, 01:06 PM
Oh my gosh Marsha this is TERRIFIC news! I have tears of happiness for you and Tommy. I don't know what I'd decide, but I think I'd be leaning toward what the doctor told you - live your life as if its your last day. We all should, really.

I keep you guys in my every day prayers and I'm just so thrilled it looks as though you finally have some encouraging news. :grouphug:

mommasita
02-17-2007, 04:25 PM
HUGS TO YOU ...I am so happy to hear this. I think a break is definitely in order...Continued prayers.:grouphug:

TomB'sWidow
02-18-2007, 11:42 AM
Congrats on the news:yay: I know from experience that any small good news sends your hope soaring. Much prayers and love are sent your way.

Taximom
02-20-2007, 08:26 AM
Wonderful, sweet news! The power of prayer!:goodvibes Wishing the two of you only the best!

TruBlu
02-22-2007, 09:04 AM
Oh Marsha, what a wonderful answer to all your prayers! I am so very happy for you and your family.

kathleena
02-24-2007, 02:49 PM
Very happy to read this wonderful news. And go.......just go.......don't hesitate to see what you want to see, like the doc said, live your lives.....

rie'smom
02-25-2007, 01:56 AM
I'm keeping you both in my prayers. Congrats on the fantastic news!

travellady
02-25-2007, 01:04 PM
Glad to hear the news regarding Tom and praying for continued sunshine. Ireland and Italy are great places to visit - especially in the spring ;) . I just read another miserable storm is headed east so a good time to plan and dream of places far away.

Disney Dee
03-11-2007, 09:13 PM
This post is late in coming, but you know my recent move, and internet fiasco has kept me away from the Dis for awhile. I did post to this thread, about 6 paragraphs, then my server went down before i got to send it:guilty: So i gave up. Just wanted you to know I am so happy with this news, and indeed, Tommy is special:hug:

zalansky
03-13-2007, 10:36 PM
MM - I have been following your story for a few weeks now - I found the thread when looking for people to share my sadness of my Dad dying with. Your story gave me such hope and so I am happy to see your post here tonight. Continued prayers to you and your special man! God Bless you both, always. :hug:

Mackey Mouse
03-14-2007, 06:58 AM
Thanks for the sweet words.. and I love the line in your signature...isn't it the truth, Zalansky....:)