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sucky scan

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Hey folks. I haven't posted much lately, but I read everything every day and I continue to be educated, inspired and amused by you guys.

My scan today totally sucked. My little band of bastards has mutated and Folfox and folfori are failures. All of the 10 or so liver mets increased in size by 30 - 40%. The few lung mets are still small. There are no new mets, and I'm not symptomatic at all - that's good. But these liver mets are really pissing me off.

The only good news is that I won't have to suffer through folfox anymore.

Kim and I are researching trials. There are a few phase 3 and phase 1 trials that might be good options. My onc is going to talk to his counterpart at Duke about their phases 1.

I'm also looking for a true TCM doctor in my area. I've got a few leads. (John23, rereading your blog has been helpful.)

SO **** damn **** ***** ************!!! My disease just keeps getting nastier and nastier. I guess I'll have to do the same.

I hope you are all well.

Roger

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

Roger, so sorry for your scan news. Don't give up. Trials are interesting and certainly will keep you busy. I am headed to SF tomorrow to meet with research doc about a new trial. Everyday, it seems something new comes along. Hang in there! Jean

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

G@d Damn it!!!!!

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

Roger,
While your hat is in the creek again that’s ok. You’re pissed and damn mad.

It is good to get mad. That keeps you from chugging on down to namby pamby land to get a little self confidence. You don’t need it anyway as you have Attitude and then some to spare. If you do run out, you can have some of mine. Old guys are full of BS and attitude. Hell, I am proof of that.

You are doing the good research to find and you will a better way to beat this crap.

By the way, I did an acid test of the reconnection today. I had hot and spicy canned chili today for lunch. So far no sharts but a lot of good farts.

Kerry (old guy that thinks a hell of a lot of you)

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

I sorry the bastards think they are making room and setting up residence. I hope the new trials can be of help.

******* Cancer

AnneCan
Posts: 3692
Joined: Oct 2009

I am so sorry for these scan results; you deserve much better than that! You are doing your due diligence + it will pan out for you. Getting nastier yourself is a good option; show those little buggars who is boss. I have missed your presence on the board.

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Keep at it! Don't give up! I'm taking about 15 supplements
trying to stay ahead of the monster!

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

Oh, Roger.

I hate reading this! You're such a special, wonderful man. I hope you find something good at Duke. I've been a very poor buddy for you here. I should have called you to see how you were doing. I'm so sorry.

Praying for you, dear.

*hugs*
Gail

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Cancer sucks! It breaks my heart to read this. Have you looked into SirSpheres? I have heard it can do great things to target liver tumors.
Good thing you are researching clinical trials. Hang in there and know I am praying for you!
Marie

NJC
Posts: 72
Joined: Nov 2010

Roger,

Contact Bartlett. He has a Phase I Trial of IHP using 5FU and Oxaliplatin. His Oxaliplatin trial showed really good efficacy.
Wife just had it done this (1/11) morning and he's very, very encouraged! Any questions PM me and I'll give you my contact info for the low down.

Stay Strong!
-Joe

Jaylo969
Posts: 827
Joined: Jan 2010

I haven't posted very much lately either but I do keep up w/you guys. I am so dayum frustrated that you can't seem to get a break from the little band of mutated bast@rds and all the other S##T you have had to endure.

Sending a huge shower of sparks your way hoping it will keep you pissed at the mutants.

John can help you with the TCM info and I believe that it just might work for you.

Regards to Kim and kids. Give them all huge hugs.

Wishing some good things to come your way,

-Pat

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

I usually avoid sending reply,s to bad news posts. Because I feel I dont have the knowlege alot of you guys have when it comes to the creature (thats what I call cancer). But I have Read many of your comments Roger and think your a great guy, so I want you to know That I'm also pissed about your results and hope and pray your research will get you into something else that kills the creature forever.
TOM

z's picture
z
Posts: 1414
Joined: May 2009

Hi Roger, I am from the Anal Cancer discussion group. There are post below from cancer survivors who had liver mets and Winnie was successfully treated over 2 years ago and has been clean ever since. Anal Cancer is rare and the concoction that Winnies drs came up with worked. Theres another poster below Tim that is having the same tx as Winnie had and is also doing very well. I don't know if you would like to discuss this concoction with your dr, but I thought I would send it to you. I wish you all the best in finding the tx that will work to get rid of the mets. Lori

Here are 2 posts from winnie who was successfully treated for liver mets:

4-25-10

Hi all, I am new here but an old hand on the Rare Cancer Alliance anal cancer forum.

I am interested to know what states my fellow patients live in. It seems to me like there are very serious few cases out west, where I live (SoCal).

If you are willing to chime in with your general location, I'd love to know. I am NOT a stalker :) MP327 can vouch for me..I think.

I was initially treated by an onc in private practice, who knew my parents. He chose a brilliant, effective alternative chemo after doing some EXTRA research looking for something new for liver mets from SCC, and it was the right one for my liver mets: Carbo, Taxol, and Xeloda. But his office was understaffed and it was at times very hard to even schedule a chemo!

I transferred to City of Hope in Duarte, a major, well funded center. The care was so well coordinated that it was astonishing! But they were shocked and mystified at my San Diego guy's choice. They had to acknowledge though that he fixed my liver and it's stayed fixed for almost two years now. But I could tell they'd have given me conventional treatment had I gone to them first.

Curious also as to whose been to the biggies like MDA, Sloan-Kettering, etc.

Winnie

‹ CAT Scan results First Use of Port after surgery to place it - YIKES ›

5-12-10

Gang, I have a great letter for you to read. I'd written to Dr. Cummings in 2009 to tell him that a certain drug combo, carbo-taxol-xeloda seems to have cleaned out my liver. I did need the APR in the end, but who cares, my liver is still good.

PLEASE POST TO ANY SQUAMOUS CELL CANCER SITES LIKE THIS ONE. I also can be a resource (volunteer, self-taught) on the topic of my particular treatment. Please save this post even if you are doing fine now. `

From Dr. Cummings to me in 2009

Dear Ms Collins,

Thank you very much for this information. I am heartened to hear of your response to treatment. I shall add this management plan to my files – I have been surprised by how many patients and physicians have sent me information about successful treatment of metastatic anal cancer as a result of the editorial I wrote. The newer drugs, taxanes (for example, Paclitaxel) and platinum-analogues (for example, Carboplatin) have figured in several of these protocols and do suggest a way forward in this disease.

Once again, thank you. I wish you all the best for the future.

Yours sincerely,

Bernard Cummings

Professor, Department of Radiation Oncology,

Princess Margaret Hospital/University of Toronto .

‹ Home from the hospital Intro New Member ›

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tpmack37
Posts: 18
Joined: Apr 2010
January 7, 2011 - 12:04am
Liver mets
Hello - my name is Tim and I'm fighting the Liver mets. I was diagnosed with Anal cancer in Feb 2010 and a few days later they saw my cat scan and called me back in. Liver was in terrible shape - not a few tumors, but more like spotted like a leopard. After the 5-FU + Mytomycin and 6 weeks of radiation, I continued those 2 chemos throughout the Summer. All the while telling my doc about Winnie's story and the mixture she used. I switched to that in August and am going for one more before getting another scan for a total of 8 Carboplatin/Taxol cocktails. There has been some really positive results in the way of shrinking the tumors down. I asked my doc this week if they have shrunk enough that maybe they could be treated another way, eg: radio frequency ablation. She not only said YES that may be possible, she also added the possibility of the Gamma-Knife treatment. (I was never a candidate for those because 1) so many tumors and 2) too large - now, it may be a possibility. Another possibility is that maybe the liver tumors are dead already, which happened to Winnie.
Stay strong! Keep looking for a way to survive.
TIM

C Dixon
Posts: 202
Joined: Jan 2010

Roger,

I know you are discouraged but keep up the research. I will pray for the perfect trial. You will feel better with no oxi.

Catherine

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Roger,

Oh, I hate hearing this for you! Like you said, since the cancer is getting tougher, you're going to have to too! I'm researching clinical trials myself right now. Always something. Sounds like your onc is helping you find something- there's more out there, I am confident. Hang in there and never give up~

Lisa

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

Remember you only need a little bit of liver to live. I've been playing these games for years. Your liver regenerates. Kill a little here, kill a little there. Get a few at a time. Stop the chemo if you want. Start feeling good. Then start targeting your tumors as best you can. My current kill mechanism is Nanoknife. I haven't used it yet but the technique is very promising. Embolization works good on a large area, I took mine without the chemo. Rapidarc, Novalis, Cyberknife are all similar and effective. RFA works well. Get them one at a time if you have to.

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

Must get VERY, VERY nasty with it, Roger. Give it everything available...spirulina, camu camu, milk thistle (for that liver), AND lots of vit. D. I don't remember what all you're taking, if you still are, but i got nasty with my cancer, and my lung met disappeared. I juice carrots, apples, kale, and a quarter lime with peel, and put the powdered spirulina in it, with msm, maca, and camu camu. I'm still NED. Of course i'm attributing most of my good health to being very happy and stress-free. Find your happy, boost your immune system, and cancer won't have a chance!

The TCM doctor will want to do acupuncture, too. Each treatment cooled my body, and gave me euphoria. Put yourself in your most happy place while doing the treatments.

At home, watch a bunch of funny movies or sitcoms. OMG, if you don't offend by crude British humor, watch a couple seasons of Little Britain. I laughed my butt off, and continue to do so whenever i need a good laugh. Most of the first couple of seasons can be accessed on youtube. I do it consistently.

I have a bunch of other ideas, too. Feel free to PM me anytime.

Hugs, and much hope for your future, Roger. i know you can beat this!

Krista

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

Assuming all the new age lets be positive and at peace in our lives is a worthwhile
cancer fighting approach, then getting mad and angry is actually playing into the cancers hands in a sense.

i think we have to out think our cancer, or at least try to our smart it.
i hope our spirit and our mind are the most powerful weapons.

its great you are searching for trials and treatments, and lets use all the best medical treatments.

thanks for your post i am going to make my wonderfully flavoursome tcm tea right now.
i almost forgot.

sorry you had a setback on your journey,

wishing you the best of health and peace,

petet

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dorookie
Posts: 1736
Joined: Jul 2007

I am sorry to hear this, but try to stay strong and keep fighting, you can beat this &*%&^$* beast.

You are in my prayers..

HUGS
Beth

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geotina's picture
geotina
Posts: 2123
Joined: Oct 2009

*^%$@*^! Darn, I sure was hoping to see some encouraging news from you. I sure know the sucky scan feeling. I sent you a PM.

After our sucky scan the doc ordered a liver biopsy. As I understood it, it is not highly unusual for there to be something besides CRC in the liver, and if it was, it would open a new door of treatments. In our case, 2nd biopsy did show it was CRC.

There was a thread yesterday on the Colon Club entitled "Interesting Trials". Check it out.

Take care

Hugs - Tina

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

But hang there I'm sure trials will work this time, also did they talk you about other possible treatments like spheres ,RFA, or chemo embolization?
I ask God to allow you to find the best treatment for your liver!.
I will pray for that.

Annabelle41415's picture
Annabelle41415
Posts: 6715
Joined: Feb 2009

Sorry that they didn't come out better. Hoping the new trials will work better for you. You are in my thoughts and prayers.

Kim

Lovekitties's picture
Lovekitties
Posts: 3372
Joined: Jan 2010

Dear Roger,

So sorry to hear that the scan was sucky.

We will all light a fire and get those sparks going for you.

Hugs,

Marie who loves kitties

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Hey Roger,
I'm so sorry that you didn't receive better news, but you need to keep strong and do whatever is needed to beat the little buggers down. Sending you a few special prayers today... Hugs, Cynthia

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Dang it Roger, I'm sorry to hear aout that sucky scan. And you're right about the nasty disease, it's all that ******* you mentioned. Hoping you find a trial that works for you.

Gail

sasjourney
Posts: 395
Joined: Jul 2010

Roger,

I am sorry for your setback, but there are still lots of options out there and new ones all the time. Google Suzanne Lindley and read her story. She also has a website www.beatlivertumors.com. She is going on 13 years beating colon cancer stage 4 with liver mets.

You are in my prayers and I know you will find the treatment that is right for you.

Hugs,
Sara

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

But I'm sure you're fare for throwing in the twoel on this fight. Keep us posted on anything you and your "team" comes up with.

Tell the family I send my love
Brooks

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Ya...that is SUCKY!! Dang crap cancer POS!(piece of Sheit) You still have a lot of options Rog. Glad you are standing strong but thats just how you are. Keep us updated. Take care

CAW!!! CAW!!! POS Cancer crap!!!!!

Luv ya Rog!

Jennie

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

well Roger how many times can we say.....well that is the craps????

that stinks Roger but something will come along for you.....

sending hugs, prayers, best wishes

mags

bruins1971's picture
bruins1971
Posts: 227
Joined: Nov 2010

I am so very sorry to hear that the dang cancer is growing. I hope that you will be able to find a clinical trial that will kick the cancers *** and get you back on the path you need to be on. Stay strong my brother and remember that we are all pulling for you.

Bobby in Dallas

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Roger,
I am so sorry that dam* cancer is growing. You and Kim are a very strong team. I am hoping and praying that you find something that beats the hell out of the cancer.

Aloha,
Kathleen

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