Topic: Not sure where to post? It's been over a year...

Hi Everyone,
I initially posted here back in Summer 2006. 
So much has happened since that time, and I feel badly about this, but I have to admit I became one of those "if you don't look it in the face, it isn't there" sort of people.  I became afraid to log onto this website, fearing I'd find only the bad stuff.  I'm sorry for that.

I had RFA done on my liver in Dec 2006 and my surgeon felt he'd gotten it all.  My Oncologist continued to diagnose me as CUP wtih a history of Breast Cancer even though my surgeon after the RFA was as certain as he could be, that my adenocarcinoma was CC. 
After the RFA in Dec 2006, I continued on Gemzar chemo through June 2007.  The RFA had gotten rid of all signs of tumors in my liver and they kept me on Gemzar in hopes of sidetracking any recurrance. 
I had to stop the Gemzar in June 2007 however, because of the damage to my kidneys and blood.  My albumin level was very low (they first diagnosed the swelling in my entire body as Lympedema.  Thank goodness for a good Nephrologist who caught it!) and my platelets and WBC haven't been the same.  They are still low. 
Another side effect of the chemo and perhaps the CC is I now have Diabetes II and take daily insulin injections.
I wanted to go back on Gemzar or at least start on Xeloda, but my Onc was worried my body needed the break and of what going back on treatment would do. 
CT and PET Scans had been clear for exactly a year.
This past December, there was a tiny little spot barely visible to the radiologist, which he thought was the neoplasm returned.
I followed up with my Surgeon doing a 4-Phase CT last week, and it's showing a 3cm area now near where the RFA was done. 
My surgeon feels I should do another RFA. 
The worst thing was hearing him say he "couldn't say if this would take over in two weeks time or not".  Ouch! 
The dull ache in my right side had returned a few months ago.  But I guess I didn't want to admit to it. 

So now I'm wondering.....
Is Gemzar still effective?  Is there a newer chemo to try? 
My surgeon still feels this is just in my liver and hasn't spread elsewhere just yet. 
I have HMO insurance.  They've been pretty willing up to this point to approve whatever my doctors recommend (although they wouldn't approve Oscilloplatin<sp?>).  Can anyone tell me about their experience with their own HMO's and a diagnoses of CUP? 
I wish my Oncologist and Surgeon could agree.  Or maybe it's good they don't.  I don't know.
I'm really confused at the moment. 
I've seen for myself the power of the mind and how it can help when dealing with Cancer.  But it gets pretty difficult to keep those positive thoughts at times. 
I'm going to my first Cancer Support Group tomorrow.  But I wonder about that.  I only want to surround myself with positive energy, nothing negative.  I feel so selfish, and for so many years...... that just isn't me. 
And I'm angry too. 

Sorry for being so long winded.  But thanks to anyone reading this.

- Kel

Re: Not sure where to post? It's been over a year...

Hi Kel

While my Wife and I are just starting through the treatments for this terrible disease, I do not have much knowledge to impart but can sympathise with you on the frustrations with conflicting medical opinions and what seems like a general lack of comprehensive knowledge on part of the experts.  Sometimes I feel that I am educating the oncologist.  I have found the opinions from the member's of this group to be invaluable.

The one bright spot is my wife's unflatering optimism and positive outlook, a trait you exhibit in your posting.

My prayers are with you for a positive outcome in your search for knowledge.

Miles

Re: Not sure where to post? It's been over a year...

Hi Kel,  Sounds as though you have been a busy little fighter this past year.  I think your Oncologist is right on with giving your body a break.  That's exactly what I am doing now.  The chemo takes quite a toll on the bone marrow (white and red blood cells).  Did your surgeon consider maybe cyberknife.  It is a pretty precise radiation.  I mention only cause I had 3-D conformal radiation last year directly to the tumor of the liver and it was 6x8CM's. They did it as a pallative measure to stop pain and it stopped the tumor from growing.  Although I have had some other mets going on.  I would ask if it's possible to have a complete MRI of pelvis, abdomen, and chest.  That is when I discovered where my mets were. I had that done because of pain in my side and found a soft tissue tumor pressing against my spinal roots and mets to my ribs.  3-D conformal radiation again put a stop to it. Kel, I believe in the power of the mind and positive energy as but is it a match for this disease?  I still remain positive and and full of hope.  The hope will remain until it is taken as far as I'm concerned.  There is other Chemos that can be tried.  Taxotere is what I'm doing at a reduced dosage.  It is also know as docataxel (sp).  I would not go full dosage as it is a cell eater for sure.  I have to take antibiotics and Filgrastim shots days 6-11 for each treatment on reduced dosage.  First treatment was full dose and put me in nutrophenic state in 3 days.  So glad they caught your lympedema quickly but I'm sorry this battle has cuased developement od diabeties.  Kel, don't beat your self up.  Your not selfish or a bad person.  Love your self and continue making the best and most positive decisions you can.  You have a right to be angry at the disease.  It's not fair for any of us to have to go through this crap.  I really wish you the best Kel!  Your right about surrounding yourself with positive energy but sharing your experience at a group could very well boost that energy as well as give you a chance to pop your pressure relief vavle and vent alittle bit; your carrying a heavy load and dumping a little of it would do you a world of good in my opinion. Okay I think we a competing on who is longer winded. Ha! Your quite welcomed and Thank You for sharing this post.  We are all in it for the duration good ,bad, or indifferent. Although we did not ask to be we can only do our best and keep that positive energy zapping.

God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Not sure where to post? It's been over a year...

Thanks for the encouragement and info you both have shared.
Miles, I'm sorry to hear about your wife Mary.  She sounds like she has a solid support system and I hope the best for her treatments.
I find it interesting that she too, is a Breast Cancer survivor. 
I wonder what her treatment protocol was during her BC, if you don't mind my asking? 
And Jeff G, thank you for sharing more about your own battle with this.  It's very obvious in your postings, the fighter that you are.  It's motivating for people like me. 
I'm finding it helpful reading what others have to share and especially knowing you know where I'm coming from. 
I had a Dr. at Stanford when I was first diagnosed, tell me I wasn't a candidate for the cyber knife procedure.  But that was while my tumors were larger.  After chemo, they shrank initially and I was able to do the RFA in Dec 2006.
I am curious about the cyber knife though, and I'll be sure to ask my surgeon for more details and the pro's and con's of RFA vs Cyber Knife. 
My surgeon tells me the tumor is once again, very close to a main artery, making it very difficult to get to and do anything with. 

Thanks so much,
Kel

Re: Not sure where to post? It's been over a year...

Hello my name is Tony and here's my story: I'm 31 years old and was diagnosed with CC may2007. In July2007 a surgeon tried to remove the tumor but when he opened me up he realized that because where it is located he would not be able to remove it...he also found lymphs near the liver which also have disease...So he sowed me back up and pretty much wrote me off...I was told I have a year to live. My oncologist told me that chemo and radiation do nothing for this type of cancer...hence my first question...IS THIS TRUE< HAS ANYONE HAD SUCCESS WITH CHEMO & RADIATION?....I was referred to the Mayo Clinic where I am part of a clinical trial and am taking the experimental combo of erlitinib & avastin...it was shrinking everything slowly at first but my last scaN showed no improvement and there was a new area of disease on my liver that "might" have been there or "might" be new. I guess what is not working for me is the position of the tumor...I was told that radiation would kill my liver before it kills the tumor and that chemo might kill me faster than if I don't take it. What do you all suggest my next move should be? I've read a lot of your stories and have gotten hopeful that maybe I can find a surgeon who will try to remove my tumor even if its risky...and I have read that some of ya'll have been on chemo and radiation and had success...hence my next question...DO ANY OF THE HERBAL MEDICINES ACTUALLY WORK? Thanks hope to get some feedback and I will keep all of you in my prayers if you promise to pray 4 me too...I know one thing, I AM NOT GIVING UP AND I WILL BE A SURVIVOR!

6 (edited by JeffG Tue, 04 Mar 2008 08:10:36)

Re: Not sure where to post? It's been over a year...

Tony- Please read the post from me above.  Although we are individuals who have individual results from different type treatments, radiation and chemo is at this point and time pallative treatment with better responses for some and not so good for others.  Personally for myself I have been able to manage and extend my life using both radiation and different chemos.  Your oncologist needs to think outside of the box and monitor chemo effectiveness and try different chemos if one appears not to be working.  This is better than sticking to straight up protocol of 8-9 treatments when they can usually tell within 4 treatments or sooner if it is working for you. Radiation is being used all over the world for this type cancer.  It depends on how advance ,size, and most important location of tumor.  There are many types of radiation procedures depending on your situation.  One thing to remember, it's not across the board the same results for everyone. And as we keep saying get 2nd and 3rd opinions if possible as different doctors, surgeons included will try something that other doctors won't.  It boils down to getting yourself fully knowledgeable of this disease and self advocate.  Some supplements people say have been helpful.  Then again some so they have had no luck.  Milk thistle for healthy liver help is about all I am using at the moment.  I basically eat what I want but stay away from fatty and greasy food stuff.  Personally I think a loaded pizza is one of the most healthiest meals out there.  Home made ones with low fat cheese and noe greased up pans.  Prayers coming your way Tony!  Keep that positive attitude and be a survivor!  Take some extra time and click on the links of this site and I'm sure you will become very informed before the day is over. God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Not sure where to post? It's been over a year...

Hey Kel!  Well you sound like Lee and I did about 3 weeks ago...you have certainly been through way more than we have....we are just beginning to fight our batle...I just want you to know how very brave you are and the courage it takes to "be long winded" {by the way...never apologize for laying what is on your heart for all to see!} Please know that anything that is going to help you even if it seems silly right now, probably won't be in the long run. Do what it is your heart and mind tell you to do to continue this fight. I read Psalm 91 every day as well as Psalm 37...give it a try...you are not alone and alot stronger than you might think! Lots of wonderful thoughts and prayers coming your way!

Heather

Re: Not sure where to post? It's been over a year...

Hey Kel,

Mary had a masectamy followed by reconstructive surgery.  By the time her oncologist saw her, he felt that it was too late for chemo and that due to the very early stage of the breast cancer and clear lymph nodes, probably not much benefit.  So he placed her on tamoxifen citrate 20mg daily.  That and blood work every three months checking for any markers.  3.5 years - no indication of any problems.  I still find it amazing that with the close medical supervision that there was no early indications.  I lay awake at nght wondering if the blood testing was thorough enough???  The CC was diagnosed looking for the jaundice problem.  She was like you - it unjustly just happened.  Thanks so much for sharing your situation as it has allowed me to build on the list of questions for her oncologist.

Re: Not sure where to post? It's been over a year...

Hey there everyone!
Soooo very much has happened since my last posting.  Boy oh boy, it's been a roller coaster ride.  A new roller coaster ride.  I hopped off the other one, and onto a longer, dippier, heavier duty one! 
So after they did the CT guided RFA back in late May of this year, they felt really confident that they got everything that may have been the CC coming back into my liver.  They wanted me to get a follow-up CT Scan w/Contrast done in July just to be sure I was "healing" correctly. 
My doctors called me with surprise in thier voice when they told me I now not only have way too many "tiny" little milky-way type spots in the left lobe of my liver but I also have a new lesion measuring 5cm in the right side of my liver and 3 lymphnodes involved as well.  I am no longer an option for surgery of any kind.
So now my Oncologist has me on "palliative care".  My surgeon initally made everything sound like I had just a few months left.  But my Oncologist is hoping to give me two years (I'm hopefull for more of course!) by doing chemo.
I've been doing Gemzar-Taxol-Avastin since the later part of July.  Initially she wanted me to do 3 weeks on, 1 week off.  But after my second treatment, it was very apparent that wasn't going to happen.  Knocked me on my behind in a big, big way.  My WBC's, RBC's and Platelets dropped out of the bottom.  I spent 5 days in a neutropenic state, with daily transfusions.  Platelets went the lowest down to 3 (as in 3,000).  I had no go-juice in me what-so-ever! 
So she decided 2 weeks on, 1 week off.  Well that didn't work out so well either.
I took a break, because it's really about my quality of life, as I see it and went to Hawaii with my entire family for 10-days.  Time stood still while I was there.  I didn't realize how much so, until I got back late, late at night only to go to chemo the very next morning and start again.  I thought having 3-weeks off would be good.  Charge me up and get me ready for another go around. 
But chemo was last Thursday and again, my platelets have dropped to the point of needing tranfusions again.  But now I'm developing antibodies and soon transfusions won't be an option.  Has anyone else experienced this?
I wonder if transfusions from my family members would be better?  I plan to ask my Oncologist about that one.
At any rate, now I'm doing chemo at 10% reduction, once every two weeks. 
My Oncologists hope is that in doing this chemo, it will ultimately stop the cancer from growing at best for a good while (yep, I'm pretty much hoping that too!) but if nothing else, she hopes to slow it down.  She said I can have another CT Scan in two months to see if it's working.  The waiting is the pitts!!!!!  That's two months of my life, we could be trying something else, if this ISN'T working, right? 

So sometimes I feel like I'm okay with what I know.  That life is going to be short for me.  And honestly, I think most times, I'm okay with it.  I am soooo incredibly grateful for the life I have, the family I have, the friends I have.  Life is wonderful.  Truely.

But here's my biggest problem in dealing with all of this.....
My one and only son.  My heart.  My reason for living.  He's going to be 21 early next year.  His father is in the picture, but they don't live near one another.  And I wouldn't say my son is really close to his father.  For years I guess I secretly felt like that was a good thing.  I know I'm bad for admitting that.  But I have my selfish reasons.
The thought of leaving my son's life is the most difficult part of all of this.  I think of what a mess I was at his age, and beyond.  And how I wouldn't be the person I am now, if it hadn't been for the love and support of my parents.  And knowing I won't be there for those hard, really hard times in his life, that we all go through.  Knowing I won't get to see him get married (he's not in a relationship at the moment), and I won't be there for his first child....... man oh man....... this is the absolute toughest for me. 

I'm grateful, because I have this chance to "prepare" as they say.  And I've had more years with him, that other parents have had with thier children. 

But it doesn't stop me from feeling what I feel. 

Suggestions?  I'd love to hear from anyone who has lost thier parent, what they might have wanted or wished for.  Or how any other of my fellow CC'rs are managing with it. 

This really is the hardest for me. 
Another long winded one!  <grin>  Guess I seem to "save" up and then vent, eh?  This site really is a wealth of info for me and just as importantly... for my family and friends who have tons of questions I don't really know how to answer.  And they usually find their answers on here.  I'm really grateful for this website.  The info, the encourement, the sense of "being in this together".  It doesn't feel so lonely.

- Kel

Re: Not sure where to post? It's been over a year...

Hi Kel,
I can't really give you any advice on all this as I am new to all this, but what I can give you is the point of view of a daughter who knows that her mum, her best friend, is not going to be here for as long as she thought she would be... I also am sad and afraid that my mum won't be there for my wedding or for holding my hand when I have my first baby... IT kills me and is what makes me the saddest.... But what I know is that she has prepared to be a good person and has made me the strong woman that I am today. We are stronger than what parents believe... I am 28 now, but I do have a 19 year old brother and I am very confident that we will be OK. I am sure that when all the acute grief is gone and we find peace in our hearts, we will have grown from this experience.
It won't make up for my mum not being there but this will mean that she will have left us something invaluable and that is who we are.
I do hope you get to do all those things with your son but if you don't, don't fret, because you will be there in his heart.

Mercedes

Re: Not sure where to post? It's been over a year...

Kel,
I'm also a single parent, and I hear what you say about not being there  for your son.  My kids are 15, 20, 22, and knowing that I will have to say good-bye to them way before my time makes my heart ache.  I'm glad they have each other, but we all still need our moms, even when we think we are grown up.
I just pray that I'll be able to hold on until they graduate from college. 
I guess  no matter what happens, we have to trust in the hand of God to lead, guide, and comfort them.
One thing that is good on our situation is that they are very close to their grandparents and see them almost every day.  That is a comfort to me.

Re: Not sure where to post? It's been over a year...

Thanks Lisa and Mercedes.  Both points of view are helpful to me.  Lisa.... I'm there with you.  I wish my son had other siblings, and although he doesn't, he is very, very close with my sister's two kids.  They are like his brother and sister (his roommate is one of his cousins).  And I have a very tight knit family, and I know that they will be here for him.  Instead of one mom, he'll have 4!  But no one is like your mom, ya know?  I really, really hope you get to see your kids graduate college and so many other wonderful things with them, before your body leaves this world.  I will keep you in my prayers.
Mercedes.... thank you for the input of a daughter who knows her time is a bit shorter with her mom.  You sound like such a strong person, your mother comes through with you in your words.  She's lucky to have you and you to have her I'm sure.  Thank you for your post.  And I will keep your family in my prayers as well.

- Kel

Re: Not sure where to post? It's been over a year...

Hi Kel,
First of all, I want to say what a brave person you are - your courage and selflessness come through in what you write. What a great attitude - and your worries for your son are only natural, and just show how much you love him.

Your story especially touched me because I lost my mother to cc, and because I have a daughter who is 5 and who loved her Grandma Fifi more than anything. My mother didn't talk much about her illness, but she did say her one hope was that my daughter would remember her. Of course my mom's memory is all TOO alive for me, but I try to keep it alive for my daughter, too. My mother was very lucky to live to see her only grandchild, I know, but we always want more. My daughter had to go to grief counseling and so did I - and you might want to suggest that to your son. He needs to feel he can lean on someone when things get rough - friends, family, counselor, clergy.

Anyway, as a mother, I can understand how you worry about your son - I would be so worried about my daughter, no matter what age she was. There's just no helping that, I think.  As an orphaned daughter, I can tell you that your son will have some tough times after you've gone, especially since you two seem very close --that's just part of the grief of losing your mother, and there's not much that can be done about that, either, I think. But he WILL be okay, because he was raised by you, a loving mother, and I"m sure you're proud of the person he is and he will live up to your highest expectations in the end. I was 40 when my mother died and I'm still trying to come to grips with it - but I guess whether you're 20 or 40 or 60 you're going to be devastated by the loss of your mother.  I agree that 19 is such a pivotal age and I'm sure he'll have some adjusting to do, but you can help him now by saying all you need to say, letting him say whatever he needs to say (just because I know so many people agonize over what was never spoken). He will be sad, he will be upset and angry, but he will be okay. There will be a void in his life, but he will be okay. And he will always keep you alive in his heart.

Your love for him is so strong that it will sustain him for the rest of his life, and if he has children, he will pass on your legacy and raise them as you would have. You can't really lose a mother - not completely - I feel my mother's presence in everything I do, every day. She was such a part of me and I've tried to incorporate everything wonderful about her into my outlook and it's helped me deal with the pain. I'm often told that this pain is the price I must pay for loving someone so dearly - that the loss is so sharply felt, but I was lucky to have such an amazing mother for even this short a time. And your son is so lucky to have YOU -- and he'll have you always and forever, to comfort him when he needs it most.

Sorry I'm rambling - I wish you and your son only the best, and hope you beat the odds and prove those doctors wrong.

Many hugs across cyberspace from someone who had a mother like you,

Joyce M