Up date On Laine

An update on Laine, and myself, for all of you kind people who have sent hugs and messages of support.

Laine is about the same, but getting depressed, from feeling ill, and tired all the time. Her Onc has always tried to paint a good picture for her to hold onto, but having been on some Pancreatic cancer message boards for so long I knew he was just saying what he thought she wanted to hear.

I called him and made an appointment to meet with him last week, while Laine was getting her chemo infusion. I told him that I have come to accept the fact that eventually Laine will succumb to this disease. I told him I understood people don’t die from PC, but rather the complications it causes, and I just needed to know what his thoughts were. He basically told me that he expects to see the cancer become more aggressive within the next 6 months, most likely attacking her Liver, or it would rupture or cause a blockage of her intestine. Things would deteriorate from that point on.
Please don’t get me wrong, I haven’t given up, but with the help of the councilor that I am seeing, I have come to accept the reality of Laine’s condition, she may very well be one of the few lucky one’s to survive that majical five years, but the odds are against her.

He told me I am suffering from “Anticipated Grief”, and most people will face this after caring for terminally ill loved one for an extended period of time. He made me realize that I can spend 24/7 on the message boards or the Internet, and still wont find the cure, because it doesn’t exist.

I am in the process of acceptance and it isn’t an easy thing to do. I am tired and scared, and scared for her, but there is nothing I can do to change things. I try to be as supportive as I can. I encourage her when she gets to feeling bad, weather it being from the Chemo or her emotions.
I hope this doesn’t upset any of you or sound as if I am to harsh, but it’s the only way I i can look at things. I am on lexapro, to help with the anxiety and it was working well until recently. It now seems like Pancreatic Cancer, and it taking Laine is all I can think of. I guess i need to ask for a stronger med or domething to take the edge off.

Thanks for listening, and please say a prayer for Laine

Ron

We will say a prayer for both of you !!
It sounds like your road anbd ours is running parallel… it is very scary.
the days James feels good, I can imagine there is no problem, and life is
back to what it should be, and then here it comes and we are reminded that
the monster is still there. I am sosorry for Laine and for you, sometimes
it just feels like it is so hard to make it through the day…

Just keep writing when you feel like it, and know others are thinking og
you, and they really DO understand what you are dealing with…

Take care,
Judy
----- Original Message -----
From: “slowhand1843” pancreatic-cancer-cpt6268@lists.careplace.com
To: petstylst@bellsouth.net
Sent: Wednesday, October 10, 2007 3:19 PM
Subject: [pancreatic-cancer] Up date On Laine

Hi Ron,

This is my very first post on this site. I used this site in the past few months to help understand my mother’s PC condition and what could be done for her. She was diagnosed around Mother’s Day with Stage 4 PC, and was in otherwise fairly good health. She just passed away about a month ago. She was just 60 years old.

Mentally, the thing I struggled with most was just how aggressive this cancer can be, and how coherent my mom stayed throughout the process. That was the hardest part. She had two different Oncs tell her she had about 8-12 months. She of course started Chemo right away (in hindsight I’m not sure this was the best idea), and had a stint put in her bile duct. Soon after she experienced fatigue, and bouts with jaundice. She had to start pain meds. We moved her into hospice just 2 1/2 weeks before she passed away. They kept upping her meds until she was comfortable, but the downside was she starting sleeping more and more. Even at that time she was still talking, joking, and even laughing with family and friends. Beginning to end, she only made it 3 1/2 months. So do realize that the doctors can either be off in their estimates, or know different and are just trying to inspire hope.

Bottom line: I cherished every minute I could spend with her in those final weeks. We talked and reminisced about so many life events and loving memories that I will never forget. I would not trade that time for anything in the world. And although I never gave up on her, for my own sanity I had to mentally start letting her go little by little in order to deal with what the doctors knew was inevitable. When she went, it was still a shock, as the doctors were still saying she had a few weeks. But I was also relieved that she was no longer in pain, and finally at peace. Do know that time will begin to heal the pain, and don’t try to rush it. I considered antidepressants also to get through, but with time, relief and acceptance came and I didn’t have to go there. At least not so far.

Hope this helps,

Bryan

Bryan,
So sorry for the loss of you rMom, that was a big shock, and it progressed
so quikly…
I hope all is getting better for you, your Mom was young, and from what I
read on here alot of pancreatic patients are, my Husband is 54, and has been
in the fight for a year now…it seems you just never know what turns it
will take… makes me think f a bucking bronc,…
Anyways, take care,

Judy
----- Original Message -----
From: “bfeagin” pancreatic-cancer-cpt6268@lists.careplace.com
To: petstylst@bellsouth.net
Sent: Wednesday, October 10, 2007 4:47 PM
Subject: Re: [pancreatic-cancer] Up date On Laine

ron have you checked the zip file on care taker? have you checked into the cantron if not a cure it will help with the chemo.

when my brother had cancer he stayed in a room in his hospic bed there was no lace for others to sit so e tened to leave the room leaving him alone, i fell so bad. how he must had felt laying there thinking about dying leaving his seven year old son.

making the room inviting with chairs and watching old family videos together looking threw photo albums i would think would bring comford sp.

distilled water, nutrion threw her chemo port and drinking veggies drinks a little every hour will help. video found on www.video.google.com world without cancer tells of apricot kernals “no one gave any of these things to my brother” but the nutrition threw the chemo port made a big differance in how he felt. wheat grass will also help others have added info in the files to help also

my sister and i worked and seached the net after work. thats why i added so much to this site trying to save others the time so they would be able to spend time wiyh their loved ones.

you dont want to leave laine in a room by herself thinking of death. i put other videos on www.video.yahoo.com bema judgement seat of CHRIST. and you will find caluabine sp just seach for foxeskimo or cantron then click on fpxeskimo and find my page

slowhand1843 pancreatic-cancer-cpt6268@lists.careplace.com wrote:

Dear slowhand1843,

Your letter reached me through my e-mail. I haven’t been looking at pancan site and have been just deleting them. For some reason I poped into your’s. Maybe it is devine intervention…

My mother died on September 12th and I was there. If you want, I can tell you what happened as she had the small intestine blockage also. I must warn you, it was not pretty, and I am suffered everything from grief to guilt to severe depression and maybe some post tramatic stress syndrome.

If you would like to know what happened let me know. I wish I had known what to expect. If I did, I know I wouldn’t be suffering like I am now…

Sandi
skipol58@yahoo.com

slowhand1843 pancreatic-cancer-cpt6268@lists.careplace.com wrote:

My father did not die from pancreatic cancer but from a stroke.
He was totally paralyzed but fully aware. He chose to be
disconnected from life support. Without the machines helping
him to breath, he would not last very long after being disconnected.
He was taken home and my mother disconnected him. He kept
breathing on his own for a much longer time than the doctors
said he would…hours instead of minutes.

He was unable to speak but he could move his lips somewhat.
When the time appear to be close at hand, my mother saw him
move his lips and could tell what he said. First he said, “why is it
taking so long.” Then he mouthed the words, “it’s beautiful,” and
he was gone.

After an agonizing four hours, the final moment helped the family
deal with the final outcome. I hope this is helpful to any of you
who have to go through an experience similar to this.

My heart goes out to you.

=============

My wife has pancreatic cancer. She has been receiving treatment
since December 2006. She has been through three different
I.V. protocols and in between each one, she has had 'bridge therapy’
including oral Tarceva and intradermal Intron (as well as intregrated
therapy including various neutriceuticals and nutritional therapy).
After her first 12 week protocol was Gemcitabine plus paclitaxel.
The integrative therapy accompanying this therapy included the following:

Accupuncture: weekly on Thursdays. To reduce symptoms of neuropathy
and other purposes.
PeakImmune4: 4 capsules three times a day for 1 month, then 4 capsules
twice a day for 1 month, then a maintenance dose of 2 capsules twice
a day thereafter (started this therapy on Sunday, December 17, 2006).
Multi-vitamin & mineral (iron and copper free): Basic Nutrients III without
Copper and Iron, Citrate Formula, by Thorne Research.
UPC 6-93749-00606-0
With breakfast and lunch.
Melatonin, by Vital Nutrients: UPC 6-93465-41911-3. Take 20mg at bedtime.
To increase appetite, protects against chemotherapy-induced
immunosuppression by mediating the toxicity of chemo and inhibiting
free-radical production; reduces neuropathies, thrombocytopenia,
stomatitis, alopecia, malaise & vomiting.
Arctic cod liver oil (omega-3 fatty acids & vitamins A & D).
Dose: one tablespoonful daily–mixed with food/yogurt with breakfast.
(approximately 1150mg EPA and 350mg DHA per teaspoonful?..will
verify)
Anti-tumor effect (suppresses activity of Ras oncogene) and is
anti-inflammatory.
Turmeric Plus (curcumin), by Tattva’s Herbs: Standardized Extract of
Tumeric 95%
Curcuminoids, 495 mg with Bioperine 5mg. Take 500mg with breakfast
and 500mg
with lunch. UPC 8-96041-00033-4
Anti-inflammatory, anti-tumor, anti-metastasis, increases
sensitivity of cancer to
chemotherapy (synergy)…especially taxol; it has cox-2 inhibiting
effects)
Levo-Glutamine: 2 teaspoonfuls (8 grams) with breakfast and lunch.
Increase to
3 times a day on day of chemotherapy and for 2 days after.
Used to prevent neuropathy from taxol.
Wobenzym-N (digestive enzymes), by Mucos Pharma GmbH, Germany:
UPC 0-32115-41178-5
Pancreatin 56,000 USP units protease (pancreas) (300mg)
Papain 492 FIP unit (180mg)
Bromelain 675 FIP unit (135mg)
Trypsin 2,160 FIP unit (pancreas) (72mg)
Chymotrypsin 900 FIP unit (pancreas) (3mg)
Rutosid (rutin) (150mg)
Take 1 to 4 talets upon arising, at mid-morning & at
mid-afternoon.
Anti-cancer and increase activity of immune system.
Prescription Digestive Enzymes (Pangestyme CN-10 generic for Creon-10,
pancrelipase, USP): Lipase 10,000 USP units; Protease 37,500 USP
units;
Amylase 33,200 USP units. Take 1 or 2 tablets with breakfast, lunch
& supper.
For improvement in digestion. NDC 58177-0029-04 Started 12-29-2006
Mushroom Extracts (immune support)
Green Tea Extract liquid: Dose and details not known at this time.
Anti-angiogenesis and anti-tumor effects.
Diet: Sesame Seeds, Whey, Rice Pudding, Berries, Greens, Nut Butter
(whey is a source of glutathione which is an antioxidant and
chemoprotective
agent; glutathione reduces the ability of cancer cells to protect
themselves
from chemotherapy)
Almond Breeze, by Blue Diamond (soy beverage):
Ginger and Fennel Teas: Strong sips throughout the day. Details not
currently
known. For nausea.
EVERY day: Walking and slow, deep abdominal breathing

Hematocrit support: Procrit was just started on December 28, 2006 to
maintain
red blood cell levels
Immune System Support:
Leukine (sargramostim): to help maintain neutrophil levels. Later
was switched
to Neupogen.
Platelet support: Procrit helped. Chinese herbs added later.

=============

After this 12 weeks protocol, scans showed her tumor shrunk by almost 50%
and activity of the tumor dropped significantly.

She then had two weeks of oral Tarceva.

The next 12 week I.V. protocol included paclitaxel, 5-fluorouracil,
Leucovorin
and oxaliplatin. Similar integrated therapy was also included.

After this protocol, my wife’s shrunk a little more and activity
continued to
decline.

This protocol was followed by 5 weeks of oral Tarceva and 4 weeks of
intradermal Intron (interferon 2b alpha).

The last I.V. protocol was intended to include Erbitux on weeks one,
six, eleven
and 16. On treatment weeks 2 through 5, 7 through 10 and 12 through 15,
paclitaxel, 5-fluorouracil, Leucovorin and oxaliplatin were
used…however, the
insurance said they would not pay for the Erbitux (after two doses
costing over
$4,000 each were given). It was replaced by oral Tarceva. In the last few
weeks of the protocol, my wife developed a gradually worsening reaction
to the
paclitaxel and had to stop it last week. Her scans were done Wednesday and
her tumor has apparently continued to shrink …but we do not have the
details
as of yet. She reacted to the oxaliplatin yesterday (the last dose of
this protocol)
so its use is in question for the future. She now goes on a five week
vacation
from the I.V. protocols. She will likely be on Tarceva and Intron
during this
time.

Kyle

===============

Dula wrote:

to Kyle

Your wife seems to be taking a lot of medicine. Although her tumor is shrinking wonder if it is the chemo she is taking? I had to drop Tarceva as it made me deathly sick and ended up in the hospital deyhdrated and many side affects. Also even though I took Xeloda now it seems to be giving me side affects also so I am on Gemzar 1050 mg high dose. Iseem to be doing well and my small mass on the stomach wall isn’t doing anything and most of other stuff has disappeared.
What type of tumor does your wife have?
Hope things go well
mother

i bet its the other supplements she’s taking since all the natual stuff can work on the cancer without chemo everything works differently for different people

kyle you are doing a great job!
debbie

mother pancreatic-cancer-cpt6268@lists.careplace.com wrote:

Gemzar (gemcitabine) is a good drug but it (and other drugs and radiation)
stimulate the cancer cells to up-regulate certain molecular pathways which
promote the development of resistance to chemotherapy and promote growth,
proliferation and metastisis of the cancer…often in a matter of
months. One
primary molecular pathway is nuclear factor-kB (NF-kB). It just so happens
that there are many products that can block this pathway and enhance the
effectiveness of the Gemzar. These include turmeric (curcumin) and
genistein.

I would highly recommend that these products be used while using Gemzar
and other chemotherapeutic agents…for greater effectiveness.

Yes, my wife’s oral protocol is challenging to fufill. She does not
always manage
to take every dose…but she takes most. I guess it depends on how
important
it is to each individual. I help her by filling her pill-minders on a
weekly basis
in advance. She has pill-minders for before breakfast, with breakfast,
between
breakfast and lunch, with lunch, between lunch and dinner, with dinner
and at
bedtime. There sometimes are also powder-based neutriceuticals that she
mixes in drinks, teas and shakes.

She receives accupuncture for various purposes, inlcuding the reduction of
neuropathy. She uses herbal products for reduction of neuropathy and takes
neutriceuticals for this as well. They have been beneficial. I help
give her (and
sometimes she gives herself) Neupogen subcutaneous shots periodically for
white blood cell support. I provide intra-dermal interferon alpha 2b shots
during periods of her treatment for enhancement of her immune system.

She has significant nutritional guidance and training. Her taste is
messed up
so it is a challenge…with all aspects.

I think all aspects of her care is contributing the positive
responsiveness of the
cancer.

Remember also that there are at least 11 or 12 major varieties of pancreatic
cancer and subgroups of each. Reponse to treatment can vary with each
cancer type.

It is important to get a molecular pathway analysis and gene analysis of
one’s
cancer if at all possible. The following is a contact person and lab
that can
assist many of you in getting some of this testing done.

Arlet Alarcon, M.D.
Manager, Target Now/Horizon
Molecular Profiling Institute (MP)
445 N. 5th Street, 3rd Floor
Phoenix, AZ. 85004
(602) 358-8982 (direct)
(602) 358-8920 (fax)
(602) 909-7667 (cellular)

Let me know if I can answer any specific questions.

Kyle Elwood
http://health.groups.yahoo.com/group/PC_CARE/

========================

mother wrote:

Lost of taste is very hard on persons taking chemo.

On the april 2006 video on cantron the lady with breast cancer tells how fast the chemo spread her cancer changing it to stage 4. Both ladies on the video one witth brain cancer tell how fast the cancer turned around with the guadance of andy johnson and others from the hope group in MI, using cantron and other supplements, diet and exerise.

Andy always tells how the mind is a very important part of heaing and when you do have follow up test and see the improvement right away that will help.

Andy tells how important the diet is in the treatment. With pancreatic cancer it is sometimes hard with the diet and always a balnced diet it hard so finding supplements and in large amounts because cancer is a state of cant think of the correct word but your body is not and has not been diegesting its food for a while because the pancreas is not working.

Like in the book by dr kelley the enzymes (produced in the pancrease, some in the intestes) need to be replaced in large amounts so the diet can help the body heal its self.

Keeping the colon clear is important ut the coffee enemas keep the liver funtioning too as you need the bile for diegestion also. Dr oz has a video on oprah.com showing the digestive system.the body stores toxins because it doesnt want them in your blood system. So keeping elimination going is import in curing cancer and preventing.
Also check out www.drkelley.com.

If you find out about how the goverment allows so much toxins in to our food and everything else that effects and touches are body (garynull.com and the doctor that wrote cure for all cancers and all advanced cancers (you can read for free on line) you can see what the goverment allows.

Watch the videos on www.video.google.com. The cancer treatment that works, and the two world without cancer and there’s another one will show you that cancer trreatment is a big money making thing and if we had a cure for cancer a lot of people in the medical field would be in the same place our US auto companies are now!

A friend of mine’s cousin that owns a lot of companies that sell the medical supplies and his home was featured on TV and the paper as the most expensive home in michigan but i think the US also.

The say how nutasweet has caused us so much health problems like symtoms of MS. The goverment let that on the market without much testing and aspertaine was first an ant poisiong and it works very well if you try it!

I got to run but you have to understand cancer, the medical system, (they are going to make money if you get well or not) and the money and power behind it and the goverment.

I just saw jordan that wrote the makers diet. Going back to the diet that’s in the Bible.

And now the goverment is even saying we now need nine servings of fruit and veggies a day. Now who does that? That is so hard to do with all the rushing we do unless you plan.

You have to plan to be healthy and get healthy. And doctors die of cancer too so they really don’t know that much.

So many doctors hear pancreatic cancer well there’s not much we can do to help.

But others have done it and you dont hear much about them because they are back living. Or they are on other websites.

If you got a second chance would you be out enjoying life orliving infront of a monitor known to throw off the electical system in your body as TV, radios, mircowaves and cell phones. Might not give you cancer but sets you up to get cancer.

Keep your mind healthy and pray for wisdom but thank the Lord for what you have been blesed with first before you ask for anything.

Oh doctorlora day tells how you can get nutrion threw the colon implants of carrot juice.

Sorry its long and typed on my blackberry. I have two football games to go to with my grandkids.

Blessings

Debbie

batlan wrote:

I’m new to this group, but our lives seem to be running parallel to what many of you have/are experiencing.

My husband has been sick for over a year now … losing weight, nausea, no energy … In July 2007 he was given the diagnosis of pancreatic/liver cancer. The PC is Stage 4 and no treatment was recommended. He “could” have chemo and/or radiation, but was also told that neither would improve the quality nor quantity of his life so he opted for neither. We weren’t surprised with the diagnosis I guess … since both of his parents had PC as have a couple of other relatives.

Gary continues to have his sense of humor and zest for living and that has helped both of us tremendously. We both want for him to have some quality in living and to not focus on the dying. We have made all decisions together as we have in all other aspects of our marriage. We do what he feels up to doing when he can. We have nurses (Extra Mural here in Canada) come to the house. I was an LPN in the states and they have shown me how to do his IVs, run the pump, etc., so I am now pretty much doing those things for him. His primary nurse is here at least weekly, and they are on call 24/7 should we have concerns or need assistance. For a period of time he had so much nausea and vomiting that nothing was staying down including the meds. That has eased somewhat and the pain level is also controlled with increased levels of pain meds.

We watched the Oprah show a couple of days ago with Dr Oz and Randy Pausch and that also further enlightened us. None of us knows how much time we have.

We’ll continue to keep everyone here in our prayers.

Diane (and Gary)