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Some Cheering Up

andreae
Posts: 238
Joined: Sep 2003

Hi all,

So, it was a pretty shitty day. The good news is that my ultrasound shows NED and my spinal X-Rays shows bone degeneration and loss, but no lesions. But, my oncologist is flat-out worried about the CT because of my rising CEA (doing scan tomorrow and results will be in next week). He thinks, or knows, the Avastin is failing. He wants me to get Erbitux, but again, the drug isn't approved here and it's SOOOO expensive. I'm going to write the company and see what they can do for me but for the first time he talked about stopping treatment. He talked about a lot of scary things - losing control of the cancer, making the transition, backing off on knowing my results, and that he thinks I'll have a good summer but doesn't know how the year is going to evolve. We have a fabulous rapport him and I and I told him I always want him to be completely honest with me, so he wasn't trying to dash my hopes. He even reminded me that there is always hope and miracles. While I already rationally KNEW everything he talked about, my heart and spirit just don't want to hear it. He was advising that I start transitioning into acceptance. Well, okay, HOW?! Please, can someone tell me how to love life less? I'll take any pointers. Part of me wishes I hated life so this whole thing wouldn't be so hard. And I'm also torn about what happens if I can't get the erbitux. He doesn't advise any phase I clinical trials, but I think he has lost his objectivity. Then again, when does determination become stubborness? I don't want to desperately start trying drugs to live out my days in the hospital. Then again, I also don't want to turn down any outside chance that something might work. How am I going to make these decisions when the time comes?

I am kind of lost right now, but I do know tomorrow will be a better day. I'm going to school to write the letters to the drug company. I realize there are still options. Hopefully, I can access erbitux. I have also been corresponding with scouty (she has a lung met. too!) to see what I can complement the therapy with... This was just a hard conversation to have.

Okay, I really don't know if anything made any sense but thank you for listening and being there. I am just feeling so tired and beaten tonight, but I know tomorrow is a new day. And I just keep hoping the scan comes back okay... You never know!

Hugs and love,
Andrea

p.s. Today's little rendez-vous also convinced me about Vegas. I was worried about school, but I am going to say I need to go away because of medical reasons. Hey, if you got cancer, you might as well use it!!!

rejoyous
Posts: 259
Joined: Nov 2004

Oh, Andrea, I am so sorry to hear you struggling through all this. Over the last year I have grown to love your spirit and your courage, and I feel very grateful to you for all you bring to this site. I am honored to be with you now as you sort through what sounds like a very difficult appointment.

Okay, first, congratulations on NED on the ultrasound. That's really good news. We know that CEA levels are tricky, so it seems premature to invest in that info at the moment. And while bone degeneration isn't good, no lesions is significant.

Was anyone else with you for this appointment? Or was it just you and your doc? If so, that feels to me like a very difficult way to be going through this. And if you feel your doc has "lost his objectivity" are you then considering getting a second opinion?

I'm glad that you're researching the Erbitux. I'm glad that your doc says that you'll have a good summer. I'm glad that we all only have to do this one day at a time.

I wish you all the best with the scan tomorrow. When is your appointment next week? Meanwhile, I send you visions of health and big winnings in Vegas.

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

Andrea:
Remember that everything will be fine in the end; if it's not fine, it's not the end..

Nanuk

CAMaura
Posts: 719
Joined: Feb 2005

Hey there,

You are so incredibly strong - and I am incredibly glad that you and your doc have a good rapport. My sis-in-law is involved in an Erbitux Clinical trial - out of UC Davis, in California. I am happy to get info for you. Please, just let me know.

I am thinking of you and wishing you a peaceul sleep and a better Friday. Keep your faith; it is amazing.

Cheers and hugs,
Maura

goldfinch's picture
goldfinch
Posts: 737
Joined: Oct 2003

andrea,
I can only imagine what having that conversation must have done to your spirit. It's ok to feel down after a conversation like that.
However, I'm glad your onc mentioned hope and miracles, because they do exist. Look into your options, like the Erbitux. Do you have Naturopathic doctors up there in Montreal? You must, in a city that size. They might be able to help you find some natural alternatives. If not, there are some down here in Burlington. I haven't taken advantage of their knowledge yet, but I've seen the ads for them.
Wishing for only good things for you!
Mary

ron50's picture
ron50
Posts: 1720
Joined: Nov 2001

G'day Andrea,
Don't worry I have lots of crappy days. When I was diagnosed and they told me I probably wouldn't make it ,I went out fishing and had a real hard think about my life and how I would feel about it's imminent end. I was surprised that it didn't really bother me ,my life has been O.K. with lots of highs and lows and lots of middle ground and it sort of struck me that a good day was when nothing really bad happened. In retrospect I had no regrets and hadn't really done anything that I was ashamed of ,so I figured that if life ended it really didn,t worry me too much I would just launch into the next great adventure a little earlier than planned. Obviously someone with an infinitely greater sense of humour than I decided that I wasn't going to get out of life so easily and that I still have plenty of pennance to do. So fear not ,what will be will be,I wish you a long life full of days when nothing really bad happens (((((((andrea)))))) Ron.

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

Andrea,

Chin up sweetie and don't give up. Write those letters and think about contacting some of the major cancer centers throughout the US. Sometimes they offer special support and help. I go back to MD Anderson Cancer Hospital at the end of June - I will ask some questions there for you.

You are in my daily prayers. You are so strong and if anyone can get through this, you can. We'll always be here for you, always.

Kerry

littlejulie's picture
littlejulie
Posts: 311
Joined: Mar 2004

Hi Andrea,
I live in Toronto and while my mom was in the hospital we met a leukemia patient who had to write to several drug companies for her treatment that was not be covered by ohip. In the end she got the treatment she needed. Stay strong Andrea - Today is a new day.

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

Sweet Baby Girl,

I have now stewed over your post all day and have decided to reject it.

Parts of that post were from you, but others were from the *******. Don't you let him get the best of you. He is the Devil in very fancy and expensive clothes. He may slowly take your health, but he can never take you heart, soul and spirit!!!!

Close your eyes and feel my love and respect coming at you baby. It's time to help your body fight it naturally too. You know what I mean.

Big ole hugs, but I will save the bestest one for Vegas when I meet you for the first time!!!!!

Lisa P.

oneagleswings
Posts: 425
Joined: Jan 2005

Hi Andreae:
Have you considered contacting Princess Margaret Hospital in Toronto- they are pretty cutting edge for clinical trials etc. It is my humble opinion that perhaps it would be good to obtain a second opinion- a fresh set of eyes and ideas...I tuly believe you will know when "the good fight" is all but over but judging from all the posts I've read of yours- it is nowhere near over- so do what feels right deep inside
"Hope makes the path for the miracle to follow"-
Bev

jana11
Posts: 708
Joined: May 2004

Wow - I can only imagine what you are going through right now.

OK - I think you are adjusting to the possiblity of things taking a sharp turn on the road to recovery. GET A SECOND OPINION. (was that loud enough?) You are too young and strong not to. When my lung nodule was growing, my onc on MD Anderson told me to get a second opinion at another major cancer center re: surgery options. Just make sure you get a second opionion with a big wig who deals with stage 4 CRC in young people. You need aggressive care. Look at Lance - miracles happen to real people.

The trials are a a great idea. If you get too tired from different treatments and don't want more; that is the time to stop - NOT NOW!!!!!!!

You remain the studette of the site. Take a deep breath and re-energize. I'm sure this will work out. Keep up the fight.

Let us know the next step. jana

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

((((((((sweet baby girl))))))))))

Ok darling, this is the opportunity to try something else.

Would you please please please (yes, I am BEGGING) read:

A CANCER BATTLE PLAN by Anne Frahm

She did everything western medicine had to offer.....and then her doctors sent her home done with what they could do.

And she discovered juicing and supplements and LIVED to BEAT HER CANCER!!!

Her husband wrote a companion book:

A CANCER BATTLE PLAN SOURCEBOOK by David Frahm

This is the "how-to" and he also runs a place in Colorado where you can go to detox and learn how to work this program.

www.healthquarters.org

baby girl, there is so much you haven't even tapped into yet that your onc is not going to know about.

Doctors look at the symptoms, treat the symptoms but they do not go to the ROOT of the problem. So they manage the disease. But doesn't it make more sense to go to the root and heal that rather than just keep trimming the branches?

Your body does not have an Erbitux deficiency. but maybe you are too acidic or defficient in nutrients at the cellular level. So rather than be despondant over what Canada does not offer you in regards to drugs, look at what nature's cornucopia can do for you.

www.discountjuicers.com CHAMPION JUICER

www.drday.com
www.hacres.com
www.gardenoflife.com
www.cancerdecisions.com

honey, I am SOOO looking forward to meeting you in Vegas and that ain't no crap shoot!!

peace, emily who is one of your biggest fans! :-)

taunya's picture
taunya
Posts: 392
Joined: Jul 2002

Andrea, You Sweet Thing, Please get a second opinion. I am not saying that your Doc is not trustworthy or even less knowledgable than most, BUT, it cannot hurt to hear what some other big shot cancer doc has to say.
Other than that, you gotta keep the faith. The scan was good and the cea is notoriously unrelaiable. My cea level was .5 when my tumor was BIG??!!
I am thinking of you and praying for your good health and peace of mind.
I am sending you Love and Sincere Hope, use it when you need it.
love,
Taunya

Shandle
Posts: 205
Joined: Apr 2005

Andrea, I'm sorry I haven't been here the last couple of days to answer your post. I hope you feel just a bit better today (6-4)If you've been talking with Lisa P. then consider this... I was diagnosed with stage IV colon ca w/ met to lung. My whole left lower lobe was blocked from a nasty tumor. I've been doing an Alt approach and hammered down with some awesome nutrition and it is now paying off!!! Before the radiation has had the chance to work my immune system which I thought was so shot from the chemo, kicked it and I began to breath easier. In fact.. I cut back my medications that helped to keep my airway open! I cut out red meat, all refined sugars, bad fats, and all processed foods. I thought it would be hard to do this.. but, it wasn't. I am pretty ruthless sticking to it. Today and each day just gets better. When my Onc took me off the chemo... my CEA was rising as well. I won't get next CT and labs until later this month, but I'm excited about it! Hang in there darlin'.. I'll be happy to help you if you have any questions regarding Alt diet. I love it.
Huggggs ~ Wanda ... aka Xeeeeena cancer Warrior!

steved
Posts: 835
Joined: Apr 2004

It is always so hard to know what to say in these situations. y only advise that I would add to the fabulous writing sa bove is to wait until the unkown becomes knwon to make any plans or let your thoughts wander too much into the 'what ifs'. The CT shoudl give you some answers and I'm sure you will find the strenggth to deal with whatever it does show.
None of us know if or when things will take a turn for the worse and as a way of balancing this curse we are blessed with the desire and ability to treasure every day and waste nothing in our lives. This is the mantra to hoold to for now- quality of life is what is important when quantity may be threatened.
Will be thinking of you over these days and do let us now how things progress. We will be here for no matter what happens,
Steve

nettie4
Posts: 145
Joined: Mar 2004

hello andrea. i can relate to how you are feeling. in feb of this yr my pulmanary surgeon at the mayo clinic sd that we are going to have the conversation that we never wanted to have which is that i am no longer operable. i have 11 tumors in my left lung the biggest being 4.6 cm. i too am a fighter as i have 2 children ages 6 and 8 and while i am not sure what all this means i am still going to fight this with all i have. i too am off chemo right now to "enjoy my summer" and i am. you do in my opinion need to get a second opinion you seem very young and full of energy. i know when i got the blow i just kind of went in a daze for a while but i know there are options be it as some have suggested natural or checking into more chemo drugs. my onc sd he will do the combo of avastin and erbitux when i go back on, but i dont know what is around the corner. just keep fighting i know it gets tiring i have been fighting since 1998. collect all the knowledge you can from all that you may consider as a treatment plan for you then apply wisdom and go from there. i do believe miracles happen and i pray they happen for both of us. take care

nettie

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