Tom's cancer is back

oriontj

Those words no one wants to hear. But we knew it wasn't if it would come back but when...same spot...so more chemo that can be done here under the supervision of our U of C doctors. The last year was so wonderful but reality has a way of sneaking in...

We could use prayers...everyone needs them...it takes a long time to say my prayers for everyone, but I do them daily.

Of course their are always people who are in more pain...Tom's friend, frat brother and his family just got worse news than we did. He had a Whipple for bile duct cancer June 11th...and they thought they were done with cancer. Most of us here know better than that...it was done at Northwestern...it wasn't the normal bile duct cancer but neuroendocrine cancer...he had no clean up chemo and no scan for 6 months..in that time which isn't real long...his entire liver is full of tumors and it's spread...the drs said 2-3 months max...but will start him on chemo to hopefully shrink the tumors..

We had asked our drs to tell us one way or another before we came up but they didn't and I called them on that. I told them that when we specifically asked it was so we could gather ourselves mentally and emotionally and get our questions written out..not hospital policy..that's when I said...your patients needs come before hospital policy...especially since my husband asked we be notified. I bet that doesn't happen again in the future.

I'm generally quiet and do a lot of listening unless I get really upset and then everyone knows about it...just my way of handling things...

So here we go again...but this time not every day to Chicago..which in the middle of winter is a blessing..we're a few minutes away from where he will get his chemo.

He's always brave to the point of no emotions at all...we're polar opposites..which is extremely tough on both of us.

That's it for now.

I hope you all have a Happy New Year and they find something to cure cancer soon...too many people have their lives torn apart by this

jan.

Unknown

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linda1120

I am so sorry
Dear Jan and Tom,

I am so sorry to hear your news the cancer is back. I will keep you in my prayers and may you continue to rely on your Lord and Saviour during this difficult time.

God Bless,

Linda

Donna70

linda1120 said:

I am so sorry
Dear Jan and Tom,

I am so sorry to hear your news the cancer is back. I will keep you in my prayers and may you continue to rely on your Lord and Saviour during this difficult time.

God Bless,

Linda

very sorry to hear this
Dear Jan and Tom,
So very sorry to hear this news. I don't blame you for telling the drs they should have told you before you got up there. It is hard to bear but I am glad Tom will be getting the chemo closer to home. Not a good way to start the New Year but keep on fighting, they are coming up with more new treatments all the time. My prayers will be with you and Tom and hope this round of chemo works on the cancer. take care, hugs from afar,
Donna70

paul61

I am so sorry to hear the cancer is back
Jan,

I am so sorry to hear that Tom has a recurrence. That is something that is always in the back of our mind as we go to each check up and scan. Hopefully a new chemotherapy regimen will provide another period of remission.

I will be praying for you and Tom.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED

DanaMB3

Praying for you and your husband
I will certainly say some prayers for you and your husband and I am sorry for the not so good news. However, I will think positively that you'll have more good times ahead.

In response to your other note about Dr. Vilaflor. We were there yesterday from 12:30-3:30 (met with her for about 40 minutes). We did like her. She was pretty easy to talk with and definitely came across as confident and a top doc in this area. But, we were not prepared/did not know that she needed one more test to be done before she could put a plan together for him. (The EUS - which we were never told we needed by the 1st doctor) - so now we wait some more...they are trying to schedule that down there next week. She gave us an idea of what her chemo plan would be (cisplatin, 5-FU) and would also do radiation. She had my dad's CT slides run down to the surgeon/Dr. Ferguson while we were there and he looked at them briefly in between surgeries. He said he could not detemine if he would be operable or not based on the slides and would need the EUS results.

She did mention her trials going on now - one for operable patients being the ACOSOG trial. It is cisplatin, docetaxel and panitumumab followed by radiation. Is that similar to what your husband did? We certainly have a decision to make about that - I think a trial is something we only thought we would consider if he was deemed inoperable. We are just so confused and praying we make the best decisions.

Where is your husband having his chemo carried out? My parents live in the Schaumburg area so it's definitely a drive and as you know the traffic is horrible. We know it's not going to be convenient but will do the best we can.

Unknown

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unclaw2002

Jan,
I will keep you in my
Jan,

I will keep you in my prayers and thoughts. If you haven't already - see if the doctors can do the HER2 test on the tumor and include herceptin in the drug regime if he is one of the lucky ones to test positive for the receptors. We all keep praying for a cure and a significant breakthrough in treatment.

Lots of hugs,
Cindy

sandy1943

Jan, So sorry to hear the
Jan, So sorry to hear the cancer is back. I pray for God to comfort you both as you continue fighting this beast.When we're in our darkest hour only God can give us the peace to make it through.

My thoughts and prayers are with you both,
Sandra

zinniemay

sandy1943 said:

Jan, So sorry to hear the
Jan, So sorry to hear the cancer is back. I pray for God to comfort you both as you continue fighting this beast.When we're in our darkest hour only God can give us the peace to make it through.

My thoughts and prayers are with you both,
Sandra

Thinking of you
Jan,
We are on that road too were shocked in less thatn a year his cancer came back and it is scary . But one day at a time .
My thoughts and prayers are with you both

oriontj

DanaMB3 said:

Praying for you and your husband
I will certainly say some prayers for you and your husband and I am sorry for the not so good news. However, I will think positively that you'll have more good times ahead.

In response to your other note about Dr. Vilaflor. We were there yesterday from 12:30-3:30 (met with her for about 40 minutes). We did like her. She was pretty easy to talk with and definitely came across as confident and a top doc in this area. But, we were not prepared/did not know that she needed one more test to be done before she could put a plan together for him. (The EUS - which we were never told we needed by the 1st doctor) - so now we wait some more...they are trying to schedule that down there next week. She gave us an idea of what her chemo plan would be (cisplatin, 5-FU) and would also do radiation. She had my dad's CT slides run down to the surgeon/Dr. Ferguson while we were there and he looked at them briefly in between surgeries. He said he could not detemine if he would be operable or not based on the slides and would need the EUS results.

She did mention her trials going on now - one for operable patients being the ACOSOG trial. It is cisplatin, docetaxel and panitumumab followed by radiation. Is that similar to what your husband did? We certainly have a decision to make about that - I think a trial is something we only thought we would consider if he was deemed inoperable. We are just so confused and praying we make the best decisions.

Where is your husband having his chemo carried out? My parents live in the Schaumburg area so it's definitely a drive and as you know the traffic is horrible. We know it's not going to be convenient but will do the best we can.

Trials
We were there just before you and left before you arrived...

My husband's trial drugs were cisplatin, taxol and erbitux...

His schedule was brutal....radiation every day..Chemo on Wednesday...it took 8 hours with all the stuff they do in between + radiation..and every Thursday and Friday hydration therapy which is really important. All of this had to be done at the U of C since it was a trial. Dr. Villifor likes to keep an eye on her patients...all of them.

We live in NW Indiana and he generally rode the South Shore Train in...when he got off the train, the shuttle to the U of C picked him up and dropped him off right there. Many times I would drive him up or take him to the station and then he would call and I would go up and get him...via the Skyway and Indiana Tollroad...fortunately for both of us I will literally drive anywhere and in any traffic...

Now since this isn't a trial he can have his chemo done locally at that's 5 mins from our house...driving to the U of C is no picnic and in the winter, well that's a whole different ball game entirely. He will be supervised by the liason doctor from the U of C we met in 2009...he will keep in touch with Dr. Villifor and Dr. Campbell. We know so much more than we did in Sept 2009...it's a steep learning curve, but the board can help you in that area...if you have a question ask.

As far as operable..the surgeon pretty much decides that..Tom had one active lymph mode in the clavicle area that nixed the surgery for him..

Making the right decision...first of all you are at the best place in the Chicago area for your Dad's care. She is a top specialist in the field..the chemo treatment area will give your Dad excellent care and supervision...I can vouch for that.

Dr. Villifor and Dr. Campbell will help you with the decisions and you will find your gut feelings are generally good ones.

I hate that your family has to go through this...everyone here will say the same thing...but you have good doctors...and that makes a big difference.

They'll get that test done quickly...they don't keep you waiting and waiting..so you're in luck there.

You can email me if you like..you can also call...your Dad can talk to my husband if he'd like...

I know you're scared...terrified might be a better word...we're all scared..we've all been shocked, horrified, confused, numb and in a daze..once everything starts it will be better..because you'll be working toward the goal of beating the cancer...

Let me know if I can help you in any way...even if it's just a shoulder to cry on..I'll be here for you.

jan

Are there any trains he can take? It's a good option for constantly driving..

EUS...would that be the endscope ultra sound test? Our local hospital does not do that..they don't have that...but our original gastro dr..told us u of c does and sent us to Dr. Wallace...here's a good one..our original gastro dr..graduated with our oldest son and use to study AP Chem in our living room..

oriontj

unknown said:

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Thank you William
for your kind,thoughtful and comforting words. Poor Paul was always writing to the Corithians...we have many readings in our Masses to this topic.

When we heard the news which was not unexpected, I emailed Father Mike and we had a long talk this afternoon. We didn't talk about God's plan...he said, You know that already..he has one and we don't know what it is. We talked about family dynamics..he's totally knowledgeable in this area and lifted any guilt I had entirely. He confirmed me and the senior Deacon, a friend of Tom's was my sponsor..funny how things work out.

I am a later convert to Catholicism...he smiled and said, I like the late converts the best because either they choose the Church or the Church chooses them...for me he said I was choosen by the Church to be a Catholic..he's right of course. I was totally drawn to it...Father Rick told me while I was going through RCIA classes, I was listening when the Holy Spirit spoke to me. He's also correct. I am a devout Catholic...my background is Orthodox and Presbyterian...quite a mix..I brought Tom back to his growing up faith...we attend Mass together. Even in Alaska I found a Mass for us to attend..even though he said well we really don't have to go...nope we went.


Your names are written in our Parish petition book..all of your names...they are on our prayer list, each and everyone of you. The more prayers the better.

I know in my heart that Jesus will take my burdens as his own...some times I need to remind my mind of this fact.

Everyone on this board comes with many gifts...we don't know we have. Most of the time we hear the heartbreadking stories...and I wonder what do you all like to do? Do you have special hobbies, special colors you love, special things you like to see? I don't know those things and I am curious.

For me..it's a degree in molecular Biology MS..it's the color blue...I'm an artist..I can paint anything in watercolors and oils...I love to paint...I can knit anything without a pattern...I love photography because I then paint the pics..I love the West and I miss intensely the mountains, I use to live there and wish I still did. I loved all the new gadgets..Kindle, smartphones..big digital SLR's...Santa brought me a new Canon EOS camera..
As a teenager...I was the top woman golfer (still a girl) in the Chicagoland area and in the state...This is me..

How about the rest of you...what are you besides a caregiver or patient.?

I wish I knew what each of you like to do..perhaps you tell all of us..

Thanks to all of you for your kindness, concern and prayers..I know they help..

jan

mrsbotch

Dear jan

I know exactly what you are going thru as my husband also has a recurrence from this beast. He is now on Taxotere, cisplatin and Xeloda. Never had chemo before only the MIE surgury. We must pray that both of our husbands and all the others can battle and beat this. We are alos Catholics, not been the best ones but I have been praying alot lately. I will be getting out my Rosary beads and will say special prayers for all of us. 2011 has to be a cure for cancer year.

Barb

oriontj

unclaw2002 said:

Jan,
I will keep you in my
Jan,

I will keep you in my prayers and thoughts. If you haven't already - see if the doctors can do the HER2 test on the tumor and include herceptin in the drug regime if he is one of the lucky ones to test positive for the receptors. We all keep praying for a cure and a significant breakthrough in treatment.

Lots of hugs,
Cindy

won't work for this ec cancer
His is squamous so they don't test for HER2...because this type doesn't have those receptors..so they will mix up their cocktail and we'll see what happens..

jan

Callaloo

You are in my thoughts often, and especially now
I have the identical diagnosis as your husband and I have followed your posts with special interest. After a full year in remission, Tom has already beaten the odds, so you give me a lot of hope. You and Tom have my best wishes.

ChiefTom

Prayers
Jan,
We are saying some extra prayers for your husband, as well as all who are suffering from this dreaded disease.

Sincerely,
Liz

PS I am sending you a CSN e-mail.