Dear CC friends and family,

Can anyone tell me what it means under findings on a pet scan that says:

1.Head and Neck : There is physiologic activity

skeleton: There is physiologic activity

chest: there is physiologic activity.

2. There is no evidence of FDG-avid metastastatic disease within the thorax,abdomen or pelvis.????

Thanks, the pet scan was  from skull to mid thigh, checking to see that there is no metastisizing other than my liver.

Thanks,
Darla

Dear all my friends and family,
I just wanted to let you know that I contacted the hope lodge in unless you were going for treatments as on an outpatient basis They will not let you stay at the Hope Lodge In Manhattan, Since I am going for a surgery they would not let us stay there. If there's anyone who is going for some sort of treatment that's an outpatient basis they will let you stay there though.
God bless everyone of you and thank you so much for all your great encouragement and All the love that you show it warms my heart every time I Log in. And yes I'm going to put on those pink studded gloves and I'm to go in there fighting like a champion!!!!  wink
Love,

Darla

Dear Nikki,Cathy,Lainy,Gavin,Willow,Pam,Marion,Kris,Tiffany,Lisa,Dianne, and Nancy, and all my CC friends and family,

Thank you so much  for the thoughts, advice,prayers and information you have all generously shared with me. The trip is coming together nicely. We have Angel Flight set up to fly us out on March 2nd. and we have one pilot lined up at this time.  My church and friends are going to have a benefit dinner for me next Friday night. My cousin gave enough points for 7 nights at a hotel.
We have been so blessed!!!!

Dr. Kato requested that I have a pet scan to make sure that the cancer hasn't spread anywhere and an MRI to make sure there are no tumors on the left side. Please pray for me on the 26th of February when I have these scans done.

I will be praying for you too Nikki on the 1st!!!! looking forward to hearing about your visit!!!!


Love,

Darla

Pam,
I will be keeping Lauren in my prayers. I will be watching to see how she is doing!! God Bless you both on this journey for survivorship!!

Love,
Darla

Pam and Lauren,

Congrats to Lauren and for you too Pam!!! God has truly answered another prayer!! I am so happy for Lauren, yo have so many blessings coming your way prayers will continue to go your way and I am so happy for the great  news.

God Bless you all!!! Your news made my day!!!

Love,
Darla
p.S. Pam, thank your words of encouragement and advice. You have been such a blessing to my life !!!!!!!!!

To all my cc friends and family,

I finally got the phone call from Dr. Kato, and  my surgery consultation and pre-operative testing will all be done on March 1st.  They have blocked off Monday  March 4th and Tuesday March 5th for the surgergy date.

When I got the phone call I was on the way to get my chemo in traverse City. I cried tears of joy because now it is completely real. I couldn't stop crying, I think I cried all the way from Manistee to Traverse City which
is an hour.  I just feel as if God has blessed us with a miracle.

More good news.... I also got good results on the cat scan. The largest tumor  which started out at 9 cm. has shrunken down to 5 cm. 

Thank you so much for all your wonderful words of encouragement and for the words of advice and web sites.  We are still trying to plan the trip and put things in place yet. ACS is trying to set us up with Flights of Mercy Medical.  We just have to figure out our lodging and transportation in the city.

Thank you so much again!!
God Bless you all!!!!

Love,

Darla

Dear Friends,

Thank you so much for all the great advice and websites!!! I am still awaiting the call for the date of the consultation.  Hopefully after they see my cat scan results from Friday Jan. 25 I will get the call.

I have been working since I do cover part of my family insurance and also pay for our heating bill through my work.  I found out today that we have ( via a letter from my Dr. to approve me) short term disabliity for 6 weeks which will pay up to 60% of my gross income.  It will at least keep paying for my insurance and for my heating bill while I am recovering.  They want me to sign the FMLA act and that will insure my job for at least 12 weeks. 

I have used up all of my sick/personal/ and vacation time for this year already from being sick from the chemo thus far.  I have wanted to keep working even though I have missed alot of time which has been covered by my PTO which like I said I have completely used.

I am a little nervous to sign the FMLA act till I leave for my consultation and surgery.  I am hoping to schedule my consultation and my surgery within the next week of, so that we can save some money on the trip to NY and instead of going twice - go only once for consultation and surgery.

Does anyone know of where we might be able to obtain some fianancial help to help us pay for our expenses and the trip.  Our church said that they may be able to do a fund raiser or take a love offering.  I am worried about being able to come up with the funds to make the trip.

Thank you and God Bless you for all your help and advice!!!

Love,
Darla

To all my cc friends and family,

I first of all need to apologize for not posting on here for a couple of months.  I hope that everyone had a nice Christmas and the New Year is full of blessings for each one of you!!

I recently got a call that I qualify for an ex-vivo procedure in New York. I just had my second CT scan on Friday January 25th.  Dr. Kato wants to look at my scan and then schedule a surgical consultation.  I am going to try to schedule my appointment for a Friday and then my surgery for the following week, to save on transportation since I live in Michigan and will need transportation and lodging.  If anyone has been  to New York and has any advice, it is greatly needed. We are going to contact Angel Flight for transportation to acnd from the Hospital. My husband is going to come with me but the expenses of hotels are high for the area and transportaion to and from hotel to hospital will be expensive...any advice would be greatly appreciated since we will be down to one income, and I have no sick,personal, or vacation time left, any advice is greatly appreciated.  Do you think I should apply for disability?

Thank  you and God Bless you all!!!

Darla

Pam,

I do agree with you about surgery right now not being the best option.  I just want to find a Dr. that can say, yes Darla there are other options and I am willing to help direct your care.  I know that Dr. Zalupski is on board with my Oncologist right now, and that is very encouraging. 

I am just hoping that if I find another Dr. who will say lets discuss other options that may be available.  I am also praying for Lauren and for her cancer to continue to shrink so she can be considered for re-section or possibly transplant. She is so young and beautiful!!!

I will keep you posted on what I find out.  I am also concerned about expenses of travelling, I am not sure how we are going to be able to afford it.

Thanks  for everything,

Darla

Marion,

My boxing gloves are on, I have God in my corner along with my whole family, and I am ready to fight this fight!!!

Thanks so much for your words of encouragement!!!

Darla

Cathy,

Thankyou so much for your words of encouragement.  I do not have anything against Dr. Chapman or the Barnes Hospital. Unfortunately I just don't meet their criteria for transplant.  I plan to keep searching though, I am certain that there is a specialist that will be able to help me. 

I am just used to seeing my Dr. or oncologist and not having to seek other opinions.  The list of Specialists is vast and very scarey to me because it is reaching out into the "unknown".  I like what Marion said about putting on the boxing gloves, I feel that she is completely right and this is a big fight and I am ready to get in the ring!!!

I will let you know how the conversation goes with Dr. Kato and Dr. Javie also

Thanks again !!!

Darla

12

(8 replies, posted in Thought for the Day)

What a beautiful post way to stay positive and at the same time encourage all if us!

Thanks,

Darla

13

(1 replies, posted in Thought for the Day)

After a day of posting venting posts I thought it would be appropriate to post some positive words. I Have so much to be thankful for, I have a wonderful supportive husband, four beautiful children who support me with their love actions and prayers. Two beautiful grand children which are a blessing from God. A father who prays for me daily. A brother and sister in law who care much and call to check one all the time. I also have a church full of prayer warriors who lift me in prayers daily.

So as you can see I am very blessed in my life!!! I also know have a we new family who care and understand what I am too g through. What more could a girl ask for!!!!!!

God bless,

Darla

Dear Lainy and Pam,

I so appreciate both of you, you are right about me not knowing what is best and feel God is opening and closing doors right now for a reason.

I am anxious to contact Dr. Kato and my husband wants me to call md  Anderson Also and look at all of our options. I am going to call them both tomorrow.  If the door to these next options opens I will know it was mean to to be. I do trust my oncologist and she is doing the right things at this time.

Once again thank you for your uplifting words, you are both a blessing to me!!
Thanks and God Bless.

Darla

Lainy,

Well Ijust got the call I was fearing. Barnes Hospital said that I do not qualify for liver transplant.  I am going to try to find another cancer center that will at least consider me.  She siad that because I have a tumor that is technically not in the liver ( the largest tumor on othe main bile duct)  so that is another reason why I don't qualify there. I also am only able to have one tumor and they said I can't have transplantation after chemo.

Wow, I went from a very excited lady to very depressed and scared again so quickly.  I know that God has a plan for me I just wish I knew what it was.

Any advice  now would be greatly appreciated.  This roller coaster ride is frustrating.

Thanks again,
Darla

Lainy,
You are right and I am feeling so much more strength and power right now.  Thank you for the encouragement, it really helps with life looks bleak.  Never thought I would be in this predicament, but I am going to fight with all I've got!!!

Maybe I will even contact Dr. Kato.  The sun is starting to shine and I have you wonderful people here to thank for that!!!

smile

Darla

Pam,
You are such a sweet and thoughtful person.  I appreciate all your advice.  I know that we need to act quickly and that was why I was getting nervous.  I am so happy though, that I will be seeing a Specialist soon in Missouri.  I dion't even know if this is my answer to prayer or not, but at least somehting more is happening!!

How is Lauren doing? I sure hope she is feeling well, and enjoying her life too.  Lately I have been in a depression state and just feel like I drag myself to work, and home and I have no motivation to do anything.  I see my Oncologist on Friday for chemo, I may ask her if she has somthing that will help me with pain and sleeping so I can sleep better at night.  My mind races every night and I go over everything in my mind over and over. 

God Bless you and Lauren,
thank you for everything,
Darla

Lainy,
Where is Sloan Kettering and Dr. Kato located?  I appreciate your input and I did call Dr. Chapmans office today, and I was assigned to a nurse, and she supposedly left me a call in Sept. to let me know they want the cd's and to schedule an appt for surgery consultation.  Tomorrow she will call me back.

I feel as if my prayers are starting to be answered and they are coming in abundance. 

Linda,
I did get my first cat scan after only 6 weeks of chemo. My Oncologist will probably do another one before 6 months. That was just Dr. Zalupskis thought was,  he was thinking it would take that long to see significant change ( which is what I need to be placed on the transplant list)

Good news is that I think I may be taking a trip to Missouri soon, and I am excited about that!!!!

God Bless you all and thanks,

Darla

At this point on my journey I have been told by two Oncologists that I have advanced stage 4 adenocarcinoma.  I was told that after 6 more months of chemo we would see if the tumors are continuing to respond to treatment ( as they have already with a 1/2 cm. shrinkage) and then we could consider possilbe other options.  I was told that I am inoperable and that there is not a Dr. in the US that would consider opening me up because of the risk of spreading the cancer.

I feel as if I need to do something more, but I am not sure where to start.  My Oncologists office faxed over 50 pages of medical records to the Barnes Noble Hospital for Dr. Chapman, over a month ago, and I still haven't heard anything back.

I am sure that many others have been in my position, I am just really scared and know that I need to do something. I should't just settle for the waiting game. I don't know how much time I have.  No one has ever given me that information.  I am otherwise quite healthy.  My billirubin is actually almost normal, and my liver enzymes are elevated.  The only symptoms I experience are my food not digesting properly, and an occasional pain in my side.

I have one large tumor this is 8.5 cm. surrounding the main bile duct. I also have 4 other sattelite tumors that are on both lobes of the liver.  The cancer is contained within the liver, but the Dr.'s say it has metastisized within the liver.

Thank you for listening to me rant, I think this group is wonderful and I am so glad that I found you all!!!  Any advice right now would be great!!! Thank you so much!!!

Darla smile

Dear Pam,
Thank you so much for your words of encouragement. You are right, Dr. Zalupski was wonderful. My father, husband and one of my daughters came to my appointment today and were all pleased with the caring and compassion he showed all of us, even when we had many questions. This was a second opinion/ consultation as to treatment options. Right now I guess we just need to see the tumors continue to shrink with the chemo. 

Your daughter is so sweet and we are friends on Facebook. I am so happy that I met her and other cc patients who have so much in common. I sure hope Lauren does well, it would have been wonderful to meet her in person. I will come back to u of m one day in the future. I guess they don't do transplants though.

You are right about feeling down and needing to bring yourself back up. I try to stay as positive a I can, but sometimes just get mad. Once again though, I know that God is in control.

Thank you, God bless you and Lauren too !

Dear Lainy,
You are such a joy to talk to and always have a word of encouragement. Thank you for that beutiful poem, that was just what was needed.

As far as the chemo is concerned, the course I am currently taking is working. I take cysplatin and gemzar, then gemzar then a week off. Dr zalupski said the chemo is working so we need to stay on track with the series I am on now and then look to another cat scan 6 months after the last which was oct. 11th. He never said I would never make it to possible surgery, just that right now it was not possible.
I know that God has a plan for my life, I am just trusting Him right now for the outcome, as scarey and uncertain as that is.

Thank you so much for your words of encouragement, you don't even know how much that helps. I am so happy I found this new family!!!

Love,
Darla

Well, I don't have a lot of great news to report. I found out today that I have advanced andeocarcinoma stage 4. The stage 4 comes from the cancer metastasizing inside my liver. Dr zalupski is positively the sweetest Dr. With an amazing bedside manor. He has so much compassion for his patients. He was very straight fcorward with me in saying thant I cannot be considered for surgery or transplant at this time due to the size of the main tumor. The other satellite tumors are about 1 to 2 cm. and  it appears the chemo is starting to react to the tumors with the shrinkage.
I know I have much to be thankful for, but I felt let down after the appointment today, I guess I was expecting some magic  cure to  change the course I am on. Unfortunately I learned that this is a very rare cancer and prayers and a miracle are truly the only cure .God bless everyone and forgive me for
any negative comments. Just struggling right now!!!


God bless,
Darla

23

(17 replies, posted in Introductions!)

Lainy,

I don't have an appointment yet for U of M but my onlcogist is setting it up for me.  I am hoping soon, since my father only lives 45 min from Ann Arbor, and I would just stay with him.

I will keep you posted and let you know as soon as I find out!!! I hope you are having a fantastic weekend!!!!

Love,

Darla

24

(17 replies, posted in Introductions!)

Dear Lainy,Marion,Cathy,moderators,Wilow,Pam and Darla,

Your notes of encouragement and love have meant so much to me since joining the website and I am here to thank each and everyone of you for your thoughts and prayers.
I got some pretty remarkable great news yesterday at my oncology appt.  All my tumors have shrunk. The largest 1/2cm but some of the smaller tumors shrunk 1/2 their size and some shrunk a full 8/10 of a cm  There is  no lmypnode involment so the cancer has not metasicize.  Praise be to God the Almighty for the beginning of my miracle taking place after only two chemo series.  The Dr. was very surprised too - she was hoping for sabilization and no growth, and it has stabilized and shrunk too.

We are going to continue with the cysplatin and gemzar chemo's until I go  to UoM Ann Arbor to see a surgeon and oncollogy staff who would bring my case in front of the tumor board.  I am ecited and can't wait to hit the next land mark.  It make suffering through this chemo worth it knowing that it is all just part of the miracle unfolding!!!! God is sooo Good


God Bless you all,
Darla

25

(6 replies, posted in Introductions!)

Tina,

I just wanted to pop in and say hi.  My name is Darla and we have many things in common.  I am 48 years old I have stage 4 cc and it is also inoperable.  I have four children 23,22,20 and 13 and two grand babies that are 4 and 3 months.

I was diagnosed in August and am also going through gemcitabine and cisplatin right now.  I had two series of (6 weeks) and I go in for another cat scan to check for shrinkage on Thursday.

I also found that after being told the diagnosis you become very overwhelmed, but also I have found so much hope and so many people and it seems like you go through grieving and so many mixed emotions.  I think it is wonderful that you have a supportive husband and family to help you through this!! That makes all the difference in the world.  My husband was by my side all the way through the hospitalization and all chemo treatments thus far. 

Keep your chin up and know that there is so much hope out there.  I will keep you in my thoughts and prayers.

God Bless you,

Darla