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Pancreatic cancer

gwen66
Posts: 3
Joined: Jun 2009

Is there any who would be willing to discuss pancteatic cancer with me? I see many other cancer types listed but not pancreatic. I would like to see how you are doing and coping. I have type 2 and have had a Whipple with follow up chemo and radiation and would like to compare notes. Thanks
gwen66

LindaNuc
Posts: 9
Joined: Mar 2009

HI Gwen66... I talk to many on the Johns hopkins web site. Its a discussion board that MANY participate on. http://pathology.jhu.edu/pancreas/

Hilly2826
Posts: 2
Joined: Sep 2009

My Grandmother who just turned 80, who was more vibrant than most 20 some year olds I know, was diagnosed with Pancreatic Cancer in June. She has slowly been eaten away by the cancer and I've been experiencing what dying is. I live with my Grandma and I have been watching her die and whittle away to nothing. She doesn't eat, she only sleeps and parts of her essence have dissolved.
My heart would break everyday and I've cried so many tears that I think my body has just about run out. I know they're going to come again. She is in Hospice right now and she was given up to 48 hours. How do you cope with someone telling you someone you love only has that much time left?
I love her so much and I know it's not fair to not let her go. Part of me has accepted this but a major part of me truly believes this is all a really bad nightmare. I think she'll be here tomorrow or the next day with a big smile on her face when I wake up. We'll go to breakfast because she always loves doing that and talk about everything like we always do. She'll call me and wish me Happy Birthday in two months because I'm turning 25. My birthday is on Thanksgiving this year. We always have Thanksgiving together, just her and I.
What will I do without her? I won't be able to hold her and tell her how much I love her. I can't do any of it after this. Any of it.

I'm so angry and I'm so hurt because she had to go through this. She has been suffering for long with nausea, intense stomach and back pain, itching, rashes and weakness. She didn't deserve any of this. Nobody deserves this. I feel for any person going through cancer.
I never imagined this and couldn't imagine this but it's here and I'm scared. I'm scared because I know it's inevitable I'll be without her.

PURPLECANCER's picture
PURPLECANCER
Posts: 11
Joined: May 2009

Hi, Hope you have been and are doing well today. My husband who has pancreatic cancer hasn't been feeling well enough to respond. He had a rough week but today was able to go kayaking with our 17 year old daughter for 2 hours. He has been alseep since he came home and has not eaten anything. He has lost 25 lbs. He experienced the most excrutiating new pain yesterday, he was doubled over for about 2 minutes. We will have to ask the oncologist about that. The oncologist never really seems to concerned about his pain or discomfort. We have talked to him about a nerve block which I think is something he should try. I know it doesn't last, but if it would help so he could have a few good days in a row that would be great. Sometimes he says he feels he wants to crawl out of his skin. Is this normal for pancreatic patients to be in such misery all the time. It is really hard for him and me to live with and for me to watch. Ever since you posted I have been thinking of you and wondered how your doing. Take care and good thoughts to you. Janis

1chron1611
Posts: 6
Joined: Jun 2009

I am so happy to stumble across this post. I thought I was the only Caregiver who's husband has Pancreatic Cancer. My husband too seems to be in misery most of the time but he doesn't like to tell me because I worry. He was diagnosed Feb of this year, and just finished his 10th chemo treatment, now we wait for the scan to be scheduled and to see whats what. The last scan before he started chemo showed his tumor went from 2.5cm to 7cm in a matter of 2months, This is all very scary to us. He had to have his 3rd blood transfusion on Tuesday 3pints instead of 2, is nauseated, swelled feet and just feels horrible. Most of the time I cry or feel extremely guilty because I'm not sure what I am doing for him is the right thing or not.
And I know what you mean by being hard to watch them in pain and I know with my own husband he went from 180lbs and is now down to 135lbs, I tear up everytime I help him get dressed because I know he is embarrassed about his body now and he used to be in such wonderful physical shape. Thanks again for your post it gave me hope that I'm not alone.

Pam

gail l k
Posts: 2
Joined: Jul 2009

Dear Pam - I too have a husband with pancreatic cancer. He was just dianosed in May 09 and had his first chemo treatment this past Tuesday. He feels so bad this week...throwing up, diarrhea. He's just laying on the couch. He can't eat anything and feels horrible. I too don't know what to do to ease his discomfort. I've been trying to be supportive and offer him many things to help him feel comfortable, but they usually don't work. I just went and bought him baby food today so that maybe he could keep that down. He too lost a lot of weight the past two months. He now weights about 130 lbs and is 5'8". He started out at about 160 lbs. I'm so worried because he just had his first chemo treatment and feels this bad, what will happen down the road? Does it get better or worse? they said most people don't get the nausea, but he has it big time. He also broke out in a rash all over his chest. Now I heard that would happen and that's "good" because it means the chemo is working. (I read the worse the rash, the better, cause it means it's working. I heard if you don't get a rash it means it's not working. Have you heard that too?) Any answers you could give me would be greatly appreciated. This is the first letter I've written to anyone on here. Thanks so much for any help you can give me. Gail

nancyj_pa
Posts: 20
Joined: May 2009

My husband just had his second chemo treatment. They gave him anti nausea drugs in his IV before beginning chemo. They also gave him a prescription, but he hasn't had to take it for nausea. He does, however, have the rash. He is using creams on the rash and taking a benadryl for the itch. You should call the doctor and get him some medication so he will feel better. Nancy J

1warrior
Posts: 2
Joined: Nov 2012

My brother 44 was diagnosed last dec 2011, he has had 2 sessions of chemo and 1 of radiation along with surgery which have not helped. I am hoping my brother does not take any more chemo. He had the mouth sores and the rash, the other side effects were not so bad for him. He got a really good perscription mouthwash for the sores and a perscription lotion for the rash, both helped. At this point I feel natural medicines are they way to go. Just as helpful without the awful and painful side effects of chemo. Do some research, alot of help out there if you are willing to look. I wish I would have researched these things before my brother did the chemo.

Tim_PM
Posts: 10
Joined: Aug 2009

Gail and Pam.
I am one of those husbands with pancreatic cancer. My wife successfully beat breast cancer, and has been clean for about 3 years now. Now she gets to watch me, and lend encouragement. She didn't have to have chemo, just surgery and radiation, so we have no first hand experience with chemo. That will probably change within a couple of weeks. I had chronic pancreatitis for 7 years, and have been on disability retirement almost that long. I take morphine slow release for baseline pain management, and oxycodone for breakthrough pain. If your doctor isn't helping your husbands deal with the pain, twist their arms ( the doctor's arms) or get a nother doctor to handle the pain meds. Luckily, my primary care physician has helped me through the chronic pancreatitis, and will deal with pain meds as I need them. Most recently I started having to deal with severe diahrea (pardon if I misspell that word). I have finally gotten a formula that works for me. I take 6 or 8 imodium per day, two at a time. I also take large quantities of Pepto Bismal. I use about 32 ounces of pepto a week, or the equivalent in pepto tablets or capsules. Now I seldome experience diahrea, and am hoping that this will continue to work during chemo if needed. I also experienced nausea and vomiting early on with the pancreatitis, and used compazine to reduce the nausea. It was pretty effective, but I don't have the problem any more, and I don't know whether it will be effective should the chemo produce nausea/vomiting. I keep my fingers crossed ( and say a few prayers too) that I won't have to find a solution to nausea, etc. But will certainly hound my doctors should I be troubled by it. The squeaky wheel and all that... But if you don't let them know you are BOTHERED, they probably won't search for a solution for you for the side effects. They are very interested in shrinking the tumors, but perhaps not so interested in treating the side effects if you don't let them know just how important they are to you.
God bless both of you for helping your husbands, May God keep you and them in the palm of his hand. I also have found that I am getting a little religion again. So for what good it will do, my prayers are with you all.

gwen66
Posts: 3
Joined: Jun 2009

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

judithkay41
Posts: 1
Joined: Apr 2010

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.

b616
Posts: 5
Joined: Jul 2009

Hi gwen66,
Sounds like we are both going through about the same.
I would love to discuss things with you.
b616

Oneshot
Posts: 60
Joined: Jul 2009

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

Nunu123
Posts: 11
Joined: Jan 2010

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.

Oneshot
Posts: 60
Joined: Jul 2009

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

Nunu123
Posts: 11
Joined: Jan 2010

Thanks Oneshot, I really appreciate you taking time out to reply to my questions. I've just sent you tha e-mail and I look forward to hearing from you. Thanks!

b616
Posts: 5
Joined: Jul 2009

I had gall bladder surgery March, 2009
Doctor saw an obstruction near bile duct.
After many weeks of testing at UVA found
I had a tumor in pancreas that was cancer.
Had whipple at John Hopkins May 18th, then
had stomach infection and went back to Hopkins
for 8 more days. Now I am having radation
and chemo, 5 days week for 5 weeks. I just
had day 5. Chem and radation are suspose
to double our chance (whatever our chance was).
b616

nancyj_pa
Posts: 20
Joined: May 2009

My husband had his Whipple April 29, 2009. He just finished his 3rd dose of Gemzar (once a week), will have a week off, and then start radiation with a different chemo for about 6 weeks. This is considered adjuvant therapy to help prevent the cancer from returning. This cancer is such a beast! I sure hope all of this treatment makes a difference for both of you. If you read the Johns Hopkins pancreatic cancer discussion board, you'll read about lots of people who did well and are still alive after 5 and 10 years. There is always hope. Len's CAT was clear and his CA19 count was low when recently tested. I guess we'll all keep holding our breath every time tests are done. Wishing you well on your road to recovery. Nancy J

Tim_PM
Posts: 10
Joined: Aug 2009

Got my diagnosis just before July 4th. Have had a number of scans/tests since then. It seems to be a little bit of hurry up and wait. Haven't gotten in to see my oncologist yet. The surgeon has told me I am inoperable, and a recent PET scan seems to indicate that the cancer has spread to the kidney. Wouldn't mind sharing experiences with others in this group.
Relative to itching, I have had itching b ig time, but it wasnt due to chemo, since I haven't started that yet. Turns out the tumor closed off the liver, so it wouldn't drain. That was the cause of the itching. All for now, dinner is waiting. Looking forward to hearing from anyone out there.

wife22
Posts: 4
Joined: Aug 2009

Tim my husband had the same probelm with itching. He itch till they were scabs. the dr. put him in the hospital to give him mass doses of benadryl. Then the put a stent in his bile duct to drain the fluid it took 4 days to stop itching then.same the tumor was smashing the ducts. He had the whipple procedure but a atery was wraped around the tumor.
So i still have many questions wife22

Tim_PM
Posts: 10
Joined: Aug 2009

Wife22
There were some people that reported itching as a side effect of chemo, and so I went into it with a certain amount of trepidation. Luckily, I have had no significant itching since the stent took effect, and none related to the chemo that I can detect. I am on week 2 of Gemzar combined with a trial drug, and am having no noticable side effects yet. The doc that placed the stent said that the itching would go away gradually, the longer the duct was blocked before the stent was placed, the longer until the itching would completely disappear. So, the itching did continue noticably for a few days, but it did reduce in intensity fairly quickly. In the latter days, there was still improvement, but it wasn't as significant, because most of the itching had gone away. I think also, I may have developed a tolerance for some level of itching, and so even if it wasn't completely gone, I found the level quite tolerable (sleep was wonderful!) compared to before the stent. Best wishes, and many prayers for your husband and yourself. Some of us (even with stage 4 cancer) get lucky?? and get a couple more years to put our lives in order and make memories for those we will leave behind. May your husband be one of those. Again, care and prayers for you and your loved ones.

ulli
Posts: 3
Joined: Aug 2009

Hi Gwen
My Husband has stage 2 and a whipple ( June 09 ). He just got his second chemo treatment. First one went good, but second one left him on the sofa with no energy. I feel so helpless and I'm always worried. He had a fever and war in the hospital. All tests could not find any reason why so they send him home. Now I don't know what do do, call the doctor or not.

wife22
Posts: 4
Joined: Aug 2009

Hi ulli, If you hvae any suggestions please let me know. Like sleeping and food . Thanks My husband had the surgery 3 weeks ago . How long till your husband felt better??When did they start chemo right after surgery?? I have lots of questions Feel lost thanks the wife

ulli
Posts: 3
Joined: Aug 2009

Hi wife 22
I haven't been on here for quite a while.Sorry,would have answered sooner. My husband hat the whipple June 23rd and his first chemo July 31st. He had stage III. Needed 8 rounds of chemo. Since the bileduct was also involved they gave him 2 chemo drugs Cisplatin and gemcitabine.
He tollerated them quite well. mostly diarrhea as side effect. Not so much nausea. He called
it Chemo head. What helped him a lot was the ensure drinks and soup . He was down to 145 lbs and is now back to his old weight of 175. I'm happy to say he had his last chemo Dec 23rd and just went back to work. He still feels tired half way through the day, but it's getting better.
Feel free to ask me any questions
Ulli ( ukopy@aol.com )

wife22
Posts: 4
Joined: Aug 2009

Gwen, How did recoup after the whipple procedure? I am a caregiver for my husband , he had the procedure done 3 weeks ago. Where you able o sleep at night? What about food after the surgery? They didnot give us much information about that.Thanks

kezza
Posts: 4
Joined: Sep 2009

Had my whipple in january found eating a real problem till i got enzymes now am almost normal so long as i have my enzmes with every thing i eat. Another thing you may be interested in was that just recently i suffered an incisional hernia which till i have it repaired i am wearing what i guess you would call a girdle. Its made of wetsuit rubber that i wrap round my stomach abd it holds the hernia in place but one of the side benifits is that it holds my whipple surgery site,now i am not sure what it is whether its the extra heat or the way it holds the damaged stomach mussells but I have not felt this good in the tummy region since the whipple. Hard to descibe how much better i feel while wearing it was only cheap from the chemist anyway thought you may like to know good luck to you and yours.

Oneshot
Posts: 60
Joined: Jul 2009

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

pinoangel96
Posts: 3
Joined: Jan 2010

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

Oneshot
Posts: 60
Joined: Jul 2009

I've been doing good. Let me change that to GREAT! I just got back from the last CT on the 8'th of Jan. They were concerned about two spots on my liver that showed up in Nov. along with several inflamed spots around the area where I had my whipple. This CT showed that the spots on the liver were just normal cysts and not cancer. The inflamation in the area of the pancrease had gone away also. They said they could see it better now and that it was scar tissue. Needless to say....I felt like my steps were a little lighter when leaving the doctors office after hearing the great news! Thank you for asking!

I read your other post and I'm glad to hear you are cancer free also!

Take Care and GOD BLESS

CaryRenault
Posts: 11
Joined: Jan 2010

Hello my friend -

It has been awhile and I hope this message finds you and loved ones healthy and well.

As for myself, I have been experiencing stomach pains and today ( 28-May-2010) I got a CT scan
at Dana-Faber Cancer Institute but will not know the results until after Memorial Day weekend.

Also, once I mentioned this to my Doctor about the pain they put me on CREON http://www.drugs.com/pdr/creon.html
and I have been able to eat better and initially felt good. The pain is occassionally still there and they
prescribed oxycodone. I am nervous about getting addicted but they told me they will monitor that part of it.

I wrote to my US congresswomen to vote to have a bill before the US Senate and House put more money to it.
Here is the e-mail correspondance.

Dear Cary:

Thank you for contacting my office regarding pancreatic cancer. I appreciate your views and having the benefit of your opinion.

The Pancreatic Cancer Research and Education Act, H.R. 745, introduced by Representative Anna Eshoo (D-CA), would create an Interdisciplinary Pancreatic Cancer Coordinating Committee to advance research on the causes, diagnosis, and treatment of pancreatic cancer. This legislation is being considered by the House Committee on Energy and Commerce. You may be interested to know that in the 110th Congress, on September 10, 2007, the House of Representatives passed H. Res. 257, which supports the goals and ideals of Pancreatic Cancer Awareness Month.

Cancer is the second leading cause of death in America and over 35,000 new cases of pancreatic cancer are diagnosed in America each year. While other forms of cancer have seen increases in treatment options and survival rates, pancreatic cancer remains one of the deadliest types of cancer. H.R. 745 would provide much needed funding for the research of causes and treatment of pancreatic cancer.

I know firsthand the challenges cancer can present to a family, and I believe we should do everything possible to help make it easier to endure this difficult time. I came to Congress intent on ensuring that all Americans have access to the highest quality care and will ardently continue to work to fix this broken system. This must be one of the highest priorities for Congress because we all deserve better than the system we have today. As we work to reform our system of health care I will be sure to take your views into account.

Please do not hesitate to contact my office in the future with questions or concerns. If you would like to see what I've been doing in Washington DC, or to get my views on a certain issue, please visit my website at http://tsongas.house.gov.

Sincerely,

Niki Tsongas
Member of Congress

OneShot, keep in touch and feel free to cut & paste this e-mail message and forward to others to get therm to advocate their
US congressperson too.

Keep in touch,
Cary

Oneshot
Posts: 60
Joined: Jul 2009

Cary,
It's good to hear from you. I replied to you in a CSN e-mail. I to have been active with H.R. 745. I hope others read your post and check out Pancan.org and find out how to let their Representatives know how they feel about H.R. 745. The more people we have informed about it and trying to get their Representatives to pass H.R. 745. The better chance we have in getting it to pass. Then research funding on pancreatic cancer will not be on the back burner as it has been for several decades! Thanks again for posting that!

They took out my chemo port last month. I take that as a real good sign! I still have fatigue issues,but, I'm not complaining! My scans have gone to every three months now! Hope you are doing better. Stay in touch.

Take Care and GOD BLESS!

Oneshot

Oneshot
Posts: 60
Joined: Jul 2009

Cary,
I haven't seen a post from you in some time. I'm wondering how you are doing?

Oneshot

b616
Posts: 5
Joined: Jul 2009

Hi Gwen,

I haven't heard from you
and just wondering how
everything is going.

I have finished my 25 days
of chemo and radiation, now
get a month off to recoup
and then start Gemzar chemo.
Was hoping wouldn't have to
have it but doctors say need
to. Just had a cscan and
it was good so that is
encouraging.

Let me know how you are doing.

Barbara
b616

Bartrip_Devon
Posts: 10
Joined: Oct 2009

Hi

I have been reading through the stories and found them all very interesting.

My husband (47) as diagnosed with PC in Feb/March this year. He woke up mid Feb rather yellow, went to the emergency Dr who sent him to the local hospital for tests. He had an endoscopy etc and discovered a tumour at the bottom of his bile duct and pancreas. He had an operation to replumb his insides etc which was an awful time, not only for him and me, but also our 6 year old daughter. He was given 6-12months prognosis but has not chosen to tell anyone. He is proving to be strong and not giving into this awful illness. He has just finished his 6 months of IV chemo and 3 months of that he was on tablet chemo. we are due to see the Consultant on Monday with a view to having another CT scan and possibly having more chemo as he had no real side effects from the last lot whatsoever. He is on paracetamol, creon - enzymes he takes before meals and Zomorph for pain relief.

Anybody out there have any advice on how to support our daughter in the future or any informtion on this awful thing?

CaryRenault
Posts: 11
Joined: Jan 2010

Hi -

I read a lot of articles tonight... well, early this morning... I could NOT sleep.
Yours caught me. I only 52. My wife has been a GREAT caregiver to me. As I read the username ONESHOT who's username I like. hummm, you only get oneshot at life. I suppose thatis what was meant.

Anyway, I like your husband had similiar iching and yellowing of my skin. I had NO idea. You see I am legally blind. Once my wife heard my diareharea (?sp/) and notice my orange urination
she immediately brought me to an emergency room. You see, I always thought I could overcome
this illness, well, I have come to accept its proper term i.e., DIESEASE Yes, I learnt it from
being atthe ACS Hope Lodge in Boston,MA. Well, before, I get there I had a stent put in because my common bile duct was being blocked. I read that somewhere in the posts that someelse had jaundice too. That my initial diagnosis. I had a tumor on the head of the Pancreas.

Now, after, going thru 3 months of chemo and radiation every day while at the ACS Hope Lodge
and hopeing for the best I needed a VATS. Vascular Aided Thoracis Surgery on my right upper lobe ling to determine if it has metastaticized (?sp?) It did. So, yesterday, The 26th of January 2010. My surgeon Dr. Richard J. Swanson at Brigham and Womens in Boston,Ma refused to surgically remove the tumor. I am told once the primary tumor is removed the other canceroues cells pop-corn or proliferate.

So, on the same day i enrolled in a clinical trial; http://clinicaltrials.dfhcc.harvard.edu/trials/1397 You or someone else might find it interesting and can offer some insight.
Of course, I am depressed. Currently , I have a nice service/site dog, live with my lovely wife Elaine for a joyous 23 year marriage and continuing to the end as well as take cae of my 85 year old mother who lives with us. For what I have been thru as a youth of 16 with
astrocytoma of the brain-stem and living till 52 not much fears me. Except leaving to early a wonderful wife, mother and good dog alone in this world. I am and will try every reasonable thing I can. But, I realize something. I learnt very very young. Something not learned in highschool text books etc. That believing in a higher power some how make us human-being feel comforted. Dealing with all the pain etc. it makes us humans aware of our friagle existence and knowing or believing this is NOT really the end helps us deal with comes forth.

Thanks so much for letting me just talk. Especially, for just listening to me. I hope we all hope. I am NOT sure what stage I have via listening to the post. I hope early.

Please, provide insight if you can.

Thanks

sharonks
Posts: 2
Joined: Jan 2010

HiGwen,Ive had the same thing and im doing well

sharonks
Posts: 2
Joined: Jan 2010

HiGwen,Ive had the same thing and im doing well

jakesman
Posts: 33
Joined: Sep 2009

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.

CaryRenault
Posts: 11
Joined: Jan 2010

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

gpivato
Posts: 1
Joined: Jan 2010

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

CaryRenault
Posts: 11
Joined: Jan 2010

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
Posts: 11
Joined: Jan 2010

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

durian
Posts: 1
Joined: Apr 2010

Does any body heard about Protocel/Enteleve?

EstherMSKCC
Posts: 20
Joined: Feb 2010

Dear Durian,

I'm an employee of Memorial Sloan-Kettering Cancer Center and came across your post regarding Protocel. Our web site has an excellent resource called "About Herbs, which offers evidence-based information about herbs, botanicals, supplements, alternative regimens, etc. It includes purported uses, warnings and potential interactions, studies, and other information about each agent. Here is the link: www.mskcc.org/aboutherbs.

I took the liberty of looking up Protocel and wanted to share the link with you: http://www.mskcc.org/mskcc/html/5707.cfm?Criteria=Enteleve.

I hope this information is useful and wish you best of luck as you gather more information about this topic. -Esther

angbertolino
Posts: 4
Joined: May 2010

Hi, my wife was diagnosed with pancreatic cancer last september. She did the chemo and radiation and neither worked. The doctor was unable to do a whipple so I went searching for other options. Turns out there is a doctor in Tennessee named Dr. Stephen Cantrell and he is having an 80% success rate with curing inoperable stage III and stage IV pancreatic cancer as well as some other cancers. My partner and I are using this treatment now and it has barely any side effects aside from mild fatigue and muscle aches. Dr. Cantrell is very sincere and is a survivor himself of malignant melonoma. Basically, we figured that the chemo didn't work the first time so what would make us think it would work a second time. It might just save a life or two. I really hope this helps.

CaryRenault
Posts: 11
Joined: Jan 2010

Hi -

Please, find out who your US congress person is and tell them to support H.R. 745 view;
http://www.govtrack.us/congress/bill.xpd?bill=h111-745

To know more info.goto http://www.pancan.org/section_get_involved/advocate/congressional_update.php

To get involved goto:
http://www.pancan.org/section_get_involved/advocate/advocacy_action_center.php

Keep in touch and good luck,
Cary

Here is a response from my US congress person:

Dear Cary:

Thank you for contacting my office regarding pancreatic cancer. I appreciate your views and having the benefit of your opinion.

The Pancreatic Cancer Research and Education Act, H.R. 745, introduced by Representative Anna Eshoo (D-CA), would create an Interdisciplinary Pancreatic Cancer Coordinating Committee to advance research on the causes, diagnosis, and treatment of pancreatic cancer. This legislation is being considered by the House Committee on Energy and Commerce. You may be interested to know that in the 110th Congress, on September 10, 2007, the House of Representatives passed H. Res. 257, which supports the goals and ideals of Pancreatic Cancer Awareness Month.

Cancer is the second leading cause of death in America and over 35,000 new cases of pancreatic cancer are diagnosed in America each year. While other forms of cancer have seen increases in treatment options and survival rates, pancreatic cancer remains one of the deadliest types of cancer. H.R. 745 would provide much needed funding for the research of causes and treatment of pancreatic cancer.

I know firsthand the challenges cancer can present to a family, and I believe we should do everything possible to help make it easier to endure this difficult time. I came to Congress intent on ensuring that all Americans have access to the highest quality care and will ardently continue to work to fix this broken system. This must be one of the highest priorities for Congress because we all deserve better than the system we have today. As we work to reform our system of health care I will be sure to take your views into account.

Please do not hesitate to contact my office in the future with questions or concerns. If you would like to see what I've been doing in Washington DC, or to get my views on a certain issue, please visit my website at http://tsongas.house.gov.

Sincerely,

Niki Tsongas
Member of Congress

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