Pancreatic cancer

Oneshot said:

Ulli and Wife 22
Hope I can shed some light into some of the questions both of you have. I'm no expert by no means, but I have a wonderful wife who took care of me. She was in the same boat you both are in. I watched her go through the same roller coaster of emotions and down right frustrations you both mention. The first thing I can tell you is to write down and ask your doctors any and all questions you can think of. Just like you asked on this site. I say this because every case of pancreatic cancer surgery and it's recovery as well as chemo treatments and effects of chemo can vary from one patient to the next. My wife asked all the doctors involved as well as dietitions (sp) and nurses about what she could do or have me do after I had my surgery. She did this every visit! As good as your doctors may be remember, they are human also and sometimes just like us, they forget to cover or mention something.

Ulli asked about having fever after chemo. My doctor(s) gave me a page or two of instructions on what to do and possibly expect after chemo. On it it said if I had a fever over 100 degrees(I think) to call a certain number and go to the ER. The number was to get someone who could look up my info. for the ER folks. Remember when you go to the ER with a bad fever you make sure they know your husband is taking chemo.

Wife 22 you ask about a few things. Sleeping... not sure if it was for you or your husband you were asking about this for. I'll start with something that I had to do for several months after my whipple. I had to sleep propped up by pillows in a sitting position in bed. I could not lay flat without my wife's help to make it easy on my stomach muscles. This also made it to where I had to have her help getting back up. Turning on my side was not an option. As I'm sure your husband will tell you ..any and every movement, no matter how small. Is felt around the stomach area. Another option I did was to sleep in a recliner or a hard back chair with a pillow behind me. Eventually I was able to carefully move over to my right side while laying flat. (The left side had a port for chemo in it just below the coller bone).
Now if your asking about your sleep. Go to your own doctor and tell them what you are having to go through with your husbands condition. My wife was my caregiver and I can honestly say I think caregivers go though as much ,if not more emotional stress than us as cancer patients. My wife was afraid to burden me with her worries concerning my health as a loved one and caregiver. Always wanting to be possitive in front of me. Her doctor put her on both natural and precribed medications for anxiety and sleep for her. She doesn't have to take these anymore. It was just for a short time.

You also asked how long to regroup from surgery.. I was up and moving with stomach pain and a lot of pain medication. My stamina was pretty low. But the deal was ..I wanted to get out of the hospital ASAP! So two days after surgery. I started walking. VERY VERY slow but it helped me to get out in five or six days! I went a whole month feeling better before I had to start another round of chemo. (think you asked about that also). I might add the chemo this time gave me almost every side effect chemo has to offer except for total hair loss. It depends on the person's shape after surgery on how long before they start chemo again or not. I mentioned before about being in bed for several months. The second round of chemo after the surgery had a lot to do with that.

As far as food..I'm lucky! I can eat most anything. I have to take enzymes and a couple of other pills with and after meals and snacks. I'll tell you this up front. Be prepared for your husband possibly being picky about what he wants to eat. I about drove my poor wife crazy for a few weeks maybe longer. Chemo might have had something to do with this. My wife tollerated my craving for biscuits and gravy every morning for a good while. So with that being said let him eat whatever he craves...he most likely needs to gain weight back as most of us with pc. do. Again and I can't stress this enough ask his doctors. They have a dietition ask them also! My dietition even gave me a cook book for people who have pc. or stomach cancer. It was free. They do suggest staying away from salads. But you husband will know from trial and error, what he can tolerate eating. I know this sounds rough but, have him check his stools for blood. One time I lost seven units of blood due to ulcers that could not be avoided do to radiation treatments I had done prior to my surgery. The ulcers didn't show up till I started my chemo after the surgery. I had to get transfusions several times. Once they found the ulcers, they were fixed and I haven't had a problem since. Again just let him eat whatever he can tolerate.

GOD BLESS You both for being a caregiver for your husbands and GOD'S SPEED in thier recovery.

Oneshot

hi oneshot, just wondering
hi oneshot, just wondering how u are doing and feeling?

Oneshot said:

Compare notes
Gwen,
I had stage 3 pancreatic cancer and also had a whipple ( this was done Sept 2008 ) along with chemo and radiation before the whipple. Then had chemo after also. With the LORD'S help and a lot of prayers from family and friends I'm doing better If you want to compare notes. Just let me know.

Wishing you GOD'S speed in your recovery
Oneshot

Hope you are better
Thank you for posting your experience with this terrible illness. My partner has not had the whiple proceedure yet. He is like yourself undergoing chemo and radiation to shrink the tumour and then to have it removed. With God's help and the effectivness of the chemo and radiotherapy, I pray thsat he will be fine.

My question is this. After the radiation and chemotherpy, did you have a period of waiting before the operation to take out the tumour?

Did your tumour shrink after your first round of radiation and chemo, or did id take longer? Was it a large tumour?

I am asking all these questions because I am not at a speacialist cancer center and we do not have any answers and look to people with experience for their advice and comments.

HiGwen,Ive had the same
HiGwen,Ive had the same thing and im doing well

Nunu123 said:

Hope you are better
Thank you for posting your experience with this terrible illness. My partner has not had the whiple proceedure yet. He is like yourself undergoing chemo and radiation to shrink the tumour and then to have it removed. With God's help and the effectivness of the chemo and radiotherapy, I pray thsat he will be fine.

My question is this. After the radiation and chemotherpy, did you have a period of waiting before the operation to take out the tumour?

Did your tumour shrink after your first round of radiation and chemo, or did id take longer? Was it a large tumour?

I am asking all these questions because I am not at a speacialist cancer center and we do not have any answers and look to people with experience for their advice and comments.

Nunu123 I am doing Better
I had typed out some answers to you questions but, I went to post it and it vanished. I sent you a CSN E-mail. Will check for your reply. Sorry but it's early morning here in Texas. I have to get some sleep.

Oneshot

This could potentially save your life
I made a thread for this earlier, but it was deleted for some reason.

Disclaimer: I don't have or know anyone with PC

However, I was doing research and came across some really interesting information on a diet called the Sodi-Pallares (named after the doctor) diet that have allowed those who have tried it to go into remission from PC. In simple terms, the diet restricts sodium. You can read more about it here:

http://www.anticancercombinations.com/2009/09/how-to-follow-sodi-pallares-diet-for.html
http://www.savvynaturalhealer.com/2008/03/alternative-pancreatic-cancer.html
http://www.savvynaturalhealer.com/2008/11/about-me.html (read through the comments on this page in which Dr. Rister answers questions about the Sodi-Pallares diet towards the bottom)

Remember, this isn't a substitute for conventional medicine. If anything, consult your doctor about using it in conjunction with chemotherapy. On the last link, there are a few links in the comments that link to the story of a woman who, as of now, is 13 months in remission after being diagnosed with terminal PC who used the Sodi-Pallares diet and some other "alternative" therapies and combined it with conventional chemo, radiation, etc.

There is hope. Don't give up.

new to Pancreatic Cancer

Yes, I am willing. I just posted a reply to soemone. Please, try to locate it in here smewhere and getback to me.

gpivato said:

Hello. I have had a whipple
Hello. I have had a whipple 1 yr now, been in constant pain since, back in the hospital several times, fever, vomiting, pain,..no answers yet..I am still alive but no quality of life worth anything

Whipple
Hi -

We must be online at same time. I was refused a Whipple because the surgeon said my Pancreatic
Adenocarcinoma had metastazid (?sp?) to my lung. So, I am about to start this clinical trial.
view; http://clinicaltrials.dfhcc.harvard.edu/trials/1397

Keep in touch,
Cary

CaryRenault said:

newbie to Pancreatic Cancer too.

Hi gwen66-

I got a Pancreatic Adenocarcinoma. That is what it states on my PET scan.
The surgeon did not want to give me a Whipple because he said the it metastasid to my lung.
So, I am trying to get into view; http://clinicaltrials.dfhcc.harvard.edu/trials/1397


How are you doing? I have been listening to a lot of articles and post and noticed you have not written one in awhie.

Later,
Cary

Alternative medicine
Does any body heard about Protocel/Enteleve?

gwen66 said:

thanks to Linda
I did go on to the 'jhu' discussion site and there is a wealth of info from others with pc. It is full of good wishes and understanding. I know that I am not alone.
Thanks again. gwen66

Pancreatic cancer and the Whipple
Hi Everyone,
I just found this website and registered. I was diagnosed with Pancreatic cancer February 11, 2010 at the U. of CO Hospital in Aurora, CO. I had the Whipple procedure on March 11th, and was released from the hospital to come home on March 18th. It is a long, slow process, but I continue to improve every day. My surgical team has been pleased that my recovery has been so rapid, and today my surgeon couldn't believe how the incision has healed so quickly. I began using homeopathics in the recovery room (Arnica Montana 30 c for pain and inflammation), was eating within three days of the procedure, and though I have been plagued with nausea, I pretty much control it with nux vomica(a homeopathic), Zofran and Phenergan. I stopped my pain meds because they made me itch so much. I take very few pain meds of any kind, and today my surgeon released me less than 4 weeks out of surgery unless I have other issues or my oncologist would want me to see him for some reason during my chemotherapy treatment. It has taken several days to be able to eat much of anything, or even to want to eat with the nausea, but each day is a little better. I find that I still cannot eat much at one time, but do better with small meals several times a day. I am getting a port put in next week for blood draws and infusions; the next week I will have a CT scan(post op) and see the oncologist, and April 26th, I will begin chemo txs: 3 weeks, and then a break of a week. At the present time I will be getting chemo 4-6 months and then possibly radiation a short time after the chemo if it is deemed warranted. The statistics are so depressing on the internet, and I was advised to ignore them as we are all different. I will be getting gemcitabine for the chemotherapy. I was not able to take part in a clinical trial as I had renal cancer and a L nephrectomy in 2005, and am not yet 5 years out from that cancer. Once I am, then I will be able to participate in clinical trials in the future. Even though we live 150 miles from the U. of CO Anschutz Cancer Center and Medical Pavilions, my primary doctor recommended that I keep all my treatment team at the hospital complex where the surgery was done. That way all of my records and the team of people involved in my treatment are in one place and work together every day with patients.
I have been blessed that my tumor was resectable, that they removed it with margins,and that to date, there is no evidence of metastasis in the lymph system or surrounding tissue and that I have the option of the team at the U. of CO Hospital who specializes in pancreatic cancer surgery, treatment and research. I am a retired schoolteacher, now a massage therapist, and was practicing up until the surgery on March 11th. I hope to return to my practice once I am able at least parttime. This is my first attempt at reaching out to others who share my diagnosis for support; 5 years ago I did not use any counseling services or support groups, and I think that was not in my best interests. Now I am dealing with both at the same time,even though the renal cancer has never returned. If I can help someone else by sharing my experiences, feelings and thoughts, then I want to do just that. Although pancreatic cancer is a rare cancer in most places, it has been occurring more often than the statistics show in my home valley area in south central WY. My doctor has had the CDC come in to do studies because of the incidence of unusual cancers in our area. I would be interested in hearing others' experiences with the Whipple and where they had their procedure done.