CancerCompass message board discussion started by Manassas54 on 2/19/2008 http://www.cancercompass.com/message-board/message/all,21098,0.htm Wed, 08 Oct 2008 00:00:00 GMT Wed, 08 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi all.  I'm a 53 year old female. I have never told my story, but think its about time I looked for a support system outside my family and friends.  In Dec of  2005 my family doctor suggested I have an abdominal ultra sound due to stomach problems (I've always had some sort of tummy problems, so it wasn't unusual for us to figure if we needed to change meds or what).  As it turned out, they found a small mass in my pancreas.  I went to see my gastro Dr. and he immediately sent me to Georgetown University Hospital.  We spent from January to June 2006 doing every test imaginable.  PET scan showed negative for cancer.  Two MRCP  biopsy taking 7 pieces of the mass all showed negative, endoscopic ultrasound, octreotide scan.  They never found cancer in this 2 cm  mass.  My surgeon first decided to cancel the Whipple surgery we had planned.  He couldn't 'justify' putting me thru that with no positive tests.  Luckily, his gut feeling took over.  I had an inflammation in a duct, he decided to do the surgery. I had the Whipple on June 22 2006. Once the mass came out,  it was cancerous.  Thank God for my doctors.  I was 51 at the time. I was in the hospital for about 9 days.  I was home for about a week and had an infection problem and had to go back into the hospital and clean out the same incision. I had chemo for six months. I live alone but my mother, daughter and fiance stayed with me off and on the first few weeks after surgery.The main problem I've had since the surgery is diarrhea.  Having bowel movements up tio 15 times a day.  I average 6.  I have lost 40 pounds, but truthfully, wouldn' t mind using about 20 more haha.  It is a tough way to do it though. I am on muscle relaxers for stomach spasms, immodium (8 a day),  enzymes, but cannot get the diarrhea cleared up.  I had C-Diff (bad bacteria in intestines) and have been treated for that twice. But it hasn't changed the diarrhea. I have ct scans every 3 months.  So far, everything looks good.  I'm sure there are things I need to say and will keep an eye here.  I am curious if anyone has had diarrhea for this long (it does keep me homebound at times of course for obvious reasons)  I haven't found any foods that trigger it.  Sometimes I won't eat at all, and still run into the same problem. I'm writing because I feel somewhat alone, my family is so afraid and there are some things we can't tell them, our fears I guess.  But its looking better every day.  I'm pushing for the 5 years!  LOL......I DO recommend Whipple.  My surgeon said it is the worst surgery you can have short of a transplant.  But it was worth every bandage and tear.  I also had to have a hernia operation July of 2007, from the whipple but it was just another step. God bless all my doctors.  Other than the diarrhea I'm doing well.  (A little hairloss on the top, hate that part!)  but, I think that would have happened as I got older anyway. Sorry for the lengthy note, but l've been holding this for 2 years now and needed to share.  I've been very lucky and blessed.  I also believe that God played the major role.  I was on so many prayer lists he couldn't ignore me  :>I hope this has helped someone and I'll try and stay in touch here.  Thanks!  Brenda Manassas54 Tue, 19 Feb 2008 00:00:00 GMT Hi Brenda....I'm sure your strong positive attitude and sense of humour has been a big help in getting you well too. I have one suggestion for you to try. Very often chemo and anti biotics etc can destroy the good bacteria in the digestive tract that are necessary to keep everything working properly. Acidophilous (hope I've spelled that correctly) is a natural substance capsule containing thousands of these necessary bacteria which will replace what has been lost. You can find this at any health food store or any of the large drug stores. I hope this helps. Shemay Tue, 19 Feb 2008 00:00:00 GMT Hi Shemay.  I knew i'd forget something in trying to write my story.  My gastro doctor has tried several probiotics explaining to me the same thing you just did.  I'm currently on something called Flora-Q.  There are 4 ingredients in it one being acidophilus.  Luckily I like yogurt and try to keep it around on a regular basis.   Thanks for your help.  Brenda Manassas54 Tue, 19 Feb 2008 00:00:00 GMT Hi Brenda,I passed the five year mark last November.  Had the Whipple surgery when I was 50 years old.  The tumor was contained to the pancreas, caught at an early stage and I did not have to go through chemo or radiation treatments. Whipple is one tough surgery, but as they say better than no alternative.  I'm thankful I was able to have it. At times through this journey, I've felt alone also because I want to protect my family and friends.   I find it helpful to drop in on this board and the one at Johns Hopkins occasionally, just to see what's going on with others.  There are more survivors out there than I thought at first.  (I paid too much attention to the statistics.) Do you take prescription strength pancreatic enzymes?  I had problems with diarrhea following Whipple until I started taking them.  After getting the prescription and learning how many to take with what foods/meals (it seems it's always trial and error, each individual responds differently), I have returned to normal.  Was losing weight before also, and the enzymes stopped the weight loss also.  I take Creon.  If you do take them, and they aren't working for you, maybe you want to ask your doctor to let you try a different brand.  I have read others who say one brand works for them, and another doesn't. Hope you find a solution for the diarrhea.  Best wishes for good health. AliveInOldeTown Tue, 19 Feb 2008 00:00:00 GMT Hello Aliveinoldetown.  How wonderful to hear you have passed the  5 year mark.  I think many of us will be able to up that 20% statistic soon!! I truely understand about protecting your family.  I think that is why I am out here wandering thru the discussion boards too.  So many feelings I have that I don't want to upset my best friend (my fiance) and my daughter with, and of course other family and friends too.Do you know if there are any "chat" rooms out here for this? In answer, I originally was on creon, I didn't see any change at all.  I am currently on Pangestym EC 2 tablets before meals and also (the worst of all) Cholestyramine, I do 3 to 9 of these a day.  This is what has every one so confused. We seem to be doing the right things to the max.  But, I try not to complain.....  I am a survivor!Thanks for responding, God bless you on your journey, Brenda Manassas54 Tue, 19 Feb 2008 00:00:00 GMT As a Stage IV colon cancer survivor, I too had problems with diarhea.  My doctor gave me two shots of atropine and that did the trick.  Cptmac Tue, 19 Feb 2008 00:00:00 GMT Hello, So happy that your doctor had the good instinct and got that sucker out. As far as the diahrria, have you adjusted the enzymes at all? Maybe you need to take more enzymes with meals. I know I have to adjust them quite a bit. I take Ultrase MT12 and I take one with a small snack, 4 to 6 with a meal depending on how fatty the meal is. Now I had my pancreas totally removed so I would need more enzymes, but I have heard of several people that have most of their pancreas intact and need as many enzymes as I do. See if your doctor can maybe adjust this dose for you. Also, taking Metamucil may help this. It takes about a week to start working, but it can help with this. Ask your doctor about this as well. The trick is to drink it before the meal. My husband (rectal cancer) drinks it a few mintues before his breakfast and dinner and it works great for him, On days he forgets, he is in and out of the bathroom all day! Poor guy Kikivero Kikivero Tue, 19 Feb 2008 00:00:00 GMT I am interested what the atrpine did for your diarrhea??? My father in law was fine following the whipple but in the last couple months has been really struggling with diarrhea/stomach pain/maintaining weight and now back pain (which may be an old injury...they have checked him out..i.e. bone scan, chest x-ray etc.). We will try anything that might work for his stomach/diarrhea. He is on enzymes already but that is all anyone is suggesting...Any suggestions or ideas. Thanks for the info and inspiring stories. CanadaChris Tue, 19 Feb 2008 00:00:00 GMT Thank you cptmac, I will definitely relay this info to my doctor. Brenda Manassas54 Wed, 20 Feb 2008 00:00:00 GMT Hi CanadaChris,The one thing that I can suggest is something for the stomach pain. For over a year I had a pain that would litterly make me jump when it hit.  It was definitely some sort of spasm.  I called it my 'alien' in trying to describe it to the doctors, like in the movie when something kept popping out of the peoples bellys lol......  Finally, my dr prescribed hyoscyamine, apparently a muscle relaxer for the digestive track.  I take 2 before meals and my alien is gone.  So happy on this one.  As for the diarrhea, we'll have to hope some of these wonderful people out here can help with that.Good luck to you and your husband.  God bless, Brenda Manassas54 Wed, 20 Feb 2008 00:00:00 GMT Kikivero,Thanks for responding and for your help and advise.  Although we work trying different enzymes, we may not have found the right one for me yet.  I'll share your info with my doctor.  Thanks again, Brenda Manassas54 Wed, 20 Feb 2008 00:00:00 GMT  On 2/19/2008 Manassas54 wrote:Hello Aliveinoldetown.  How wonderful to hear you have passed the  5 year mark.  I think many of us will be able to up that 20% statistic soon!! I truely understand about protecting your family.  I think that is why I am out here wandering thru the discussion boards too.  So many feelings I have that I don't want to upset my best friend (my fiance) and my daughter with, and of course other family and friends too.Do you know if there are any "chat" rooms out here for this? In answer, I originally was on creon, I didn't see any change at all.  I am currently on Pangestym EC 2 tablets before meals and also (the worst of all) Cholestyramine, I do 3 to 9 of these a day.  This is what has every one so confused. We seem to be doing the right things to the max.  But, I try not to complain.....  I am a survivor!Thanks for responding, God bless you on your journey, BrendaHi Brenda,I haven't found any active chat rooms so far.  The American Cancer Society has a couple set up, but the times I have checked, no one is there.  Also they recently reorganized their web site and decided to add the pancreatic cancer board to Other Rare Types of cancer.  So there are fewer specific discussions of PC related issues.  If you find a chat site, please post about it here.  I'm sure others would be glad to have the information.  It's Wednesday, and the sky here is clear and blue.  Another beautiful day.  I hope you have a beautiful day also.    AliveInOldeTown Wed, 20 Feb 2008 00:00:00 GMT Brenda, I see you have Manassas under your picture. Are you in VA as well? My mother was diagnosed August 07. She has had the whipple and done very well. she too has bouts with the bathroom. I hope you find something that helps you soon :)Karen Msltlstyx Tue, 26 Feb 2008 00:00:00 GMT Good Morning to All,This message is posted with a note of concern as I, too, had PC and the Whipple Procedure in May 2003.  I had 12 weeks of Chemo and 20 rounds of radiation.  None of it was fun; but it proved successful at the time.  I have a wonderful endocrinologist (I recommend all pancreatic cancer survivors have an endocrinologist as part of your treatment team - surgeons and oncologist have their own role)   But, I agree that the Creon (pancreatic enzymes) works great for controlling diarreha and putting those much-needed nutrients back into your body.  If you are like many of us, you are probably B-12 deficient also.  I still take a B-12 injection once monthly in addition to my vitamins and other meds.Last week I was diagnosed with Recurrence - the words none of us want to hear.  We knew from the beginning that the pancreatic cancer had mets somewhere in my body because they had found it in lymph nodes; but many MANY tests did not show the disease in any of the major organs.  For the past 4.5 years I've been encouraged with Negative Blood Test and good results from multiple (PetScan, CTs, MRIs...etc)  scans every 3-6 months.  Following what I "thought" was the FLU, I started having some unusual pain in my low back, kidney area.  Have NEVER had a kidney infection in my life; but everyone said it sounded like one.  So following a standard urinalysis at my primary care office, I was told that I probably needed to follow up with the oncologist (which I was scheduled to see anyway in March)  A blood test revealed that my kidneys were not functioning as well as they had been 5 months ago.  He ordered an MRI with contrast, and I was informed last week that my Liver has Innumerable tumors which appear to be carcinoid, and that my Kidney may also be affected; but further tests would have to be done.  My physician has acted quickly, and over the past 2 weeks I have already had numerous blood chemistry schema and MRI, and Now... TODAY.. I am in Houston Medical Center (doing this from their library while waiting for my 10am appt time) having the 2nd day process of an OstreaScan to identify ALL of the carcinoid tumors in my body.  IF the disease is concentrated in the Liver alone; then I've been told an embolization is a treatment option; however, if it appears in other parts of the body; then systemic chemo and possible radiation will be the order of the day.I am looking forward to ANY correspondence that might give me treatment options that might have worked for anyone who has been diagnosed with recurrence; or specific to liver.  With the number of tumors in the liver, it appears there certainly won't be any surgerical options for me this go around.But, I do want to leave with a Happy Note.  I have throughly enjoyed and feel extremely blessed with the past 5 years.  My whipple procedure was the perfect option for me at the time - my surgeon was the BEST and we remain good friends.  It afforded me 4.5 years of Quality Time with my 2 children and 4 grandchildren.  My treatment gave me the opportunity to make it to Retirement age, and still be able to spend time with my mother before her passing in January.  But most of all, God gave me a 2nd chance in Life, together with MANY memorable experiences and adventures with my Husband of 2 short yrs (my first husband of 38 yrs died of stomach cancer in Feb of 2003, just 3 mos prior to My diagnosis)......and for ALL of this, and then some, I am extremely Thankful and feel so blessed.  Thank God for our doctors, nurses, and hospitals in the Houston Area... and most of all for our own personal Care Givers - our Family & Friends; without them None of this would be possible.  I was told 5 years ago that if you had pancreatic cancer there was about a 4% chance of survival....With the advances that have been made over the past 5 years with all cancer treatment, I am ready to face whatever comes next.  Wish me Luck!Granna-J - 59 WF from Victoria Texas Granna1 Wed, 27 Feb 2008 00:00:00 GMT Hi Karen,Yes, I am in VA.  My primary care physician is here as is my gastro doctor, two wonderful people.  My surgeries, chemo and all other doctors are at Georgetown University Hospital.  I hope  your mother does well and can keep in touch if she likes.   God bless you as one of her caregivers.  Angels....... Manassas54 Thu, 28 Feb 2008 00:00:00 GMT