For a Friend

northa914 said:

I don't have pancreatic

I don't have pancreatic cancer, but I believe one of the drugs I was given (Gemzar aka Gemcitabine) is used for pancreatic cancer.  I had few side effects from the Gemzar, hopefully your friend will be the same if this is the chemo she will be getting.  I don't have any experience with radiation therapy yet.  Has your friend gotten a second opinion? I'm assuming that the lymph node involoved was one that was located close to the pancreas and not one that is distant.  Your friend can request copies of her biopsy records which should give her the information she needs regarding the lymph node.  She can also call her oncologist to verify the stage of her disease. The designation of stage 2 or 3 would make sense if the metastasis is local and was only in the one lymph node.  Most likely it was also pancreatic cancer which had metastasized from the original tumor, but the surgeons should have sent it their pathology department to verify this. 

I hope this helps.  Please tell your friend to never give up fighting.  I was diagnosed stage IV in June 2010 and am still here.  Still stage IV but alive and (mostly) kicking!

 

Andrea

Thanks so much  Andrea!   I will talk to her again.  She is in the "head in the sand"phase now and is  willing to "trust the dr".  I trust my dr. too, but not to the point of not asking questions!  It's still early for her and was found as a fluke, so of course she is still in shock.  From what I have heard and read, the Whipple procedure in its self is a bad surgery.  I don't have experance with the drugs you mentioned,so as she goes through this I will be bqck for more answers.  Thank you again for the info!  Best, Debrajo

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northa914 said:

I know all too well the "head

I know all too well the "head in the sand phase".  My cancer was also found after a visit to my general physician for an unrelated reason.  There were two stages of my denial, one that's similar to your friend's.  I did get a second opinion after my initial diagnosis from a very well-respected and renowned cancer institution, City of Hope in Duarte, California, and a third opinion at Cancer Treatment Centers of America in Seattle (CTCA was of the opinion that I had another type of cancer and not cholangio).  Because of their reputation as a premier hospital/research center/etc., when the oncology department at City of Hope confirmed my diagnosis, we (my family and doctors) trusted their opinion and began treatments for stage IV cholangiocarcinoma.  No one could figure out why I kept surpassing expiration dates (3 months, 6 months, 11 months, 18 months).  Heck, in the beginning everyone wanted me to make end-of-life decisions, start marking the special items I have with the names of people I wanted to give them to when I passed, move my bed downstairs since I wouldn't be able to climb up the one flight to my room, etc.  I said I"M NOT GOING ANYWHERE!!!"  Fast forward to May 2012.  After an attempted liver resection, metastasis was found in my lymph nodes. This time the biopsy showed a different type of cancer, neuroendocrine carcinoid tumor. So... we proceeded to treat me as if I had two rare forms of cancer, and I began a very toxic form of chemo (FOLFIRINOX).  Fast forward again to January 2013.  After my sister (I swear this woman is my guardian angel on earth!!!) insisted on specific tests and a consultation with a specialist for the second cancer, the new diagnosis became that I NEVER had cholangiocarcinoma, had been administered the wrong treatments for 2 1/2 years, and needed to start down a new path.  Unfortunately I have an even greater battle against a cancer that is slower growing and more treatable than cholangio (gee, did it have to spead to my lymph nodes before "Oops! We made a mistake!" was declared?), but I look at it as I had a whole new list of options handed to me as the FOLFIRINOX was the last weapon we had in our arsenal should I truly have had cholangio. 

My other stage of denial is the one that helped me get this far mentally, emotionally, and spiritually.  And that was my refusal to believe that cancer could get me, even at stage IV.  I have two sons (ages 12 and 9 when I was diagnosed) that need me, at least until they are independant and productive adults.  I believed that God gave me a warning shot across the bow since I hadn't been taking care of myself for years (loads of stress, not eating or sleeping), and put me in a position where I would either have to change my life or be buried by it.  I decided I wanted to live and started not worrying about things that weren't in my control (my ex had me involved in three simultaneous lawsuits, one of which was a custody battle and all of which I won) and began taking care of my physical being.  Life has fallen into a better place since then.  Though some days are better than others, and there are times where I just want to give up, suck my thunb, and cry to my mommy (I'm 52 years old for crying out loud!), I feel blessed to have come so far realtively intact with few side effects and a much better outlook on life.

Please have your friend read this when she is a bit less shell-shocked.  Doctors are not God, and most do the best with what they know.  Cancer is a tricky and smart disease and needs to be treated as such.  Hindsight is 20/20, and had I known then what I know now, I would have not based my care on City of Hope's second opinion and demanded further research after two other oncologists (the one with CTCA and a liver specialist with Norris-USC, who suspected neuroendocine tumor in December 2010) questioned whether or not I had cholangio and not some other type of cancer.  Please let her know that even though we don't have the same type of cancer, I'm more than happy to give you, her, and her husband any kind of support and impformation I can provide.

Take care, Debrajo.  She is so lucky to have a caring friend like you!!!

 

Andrea

You are one Blessed Lady Andrea!  You have mentioned cancers and meds I have never heard of!  We have had a lot of discussion on my board about CTOA.  Did you have a good experence there?  I thought my Uterine cancer, Uterine Papillary Serous Carsonoma, was rare{one in a million}according to the dr.'s, but being at MD Anderson and on the CSN board there seems to be quite a few of us.  Never heard of your kind.  Do they do a CA125 or scans to track your progress?  I am 3 1/2 years clear even the UPSC is a grade "C" agression cancer.  I was not ready to die either{I had a 14 year old son still in high school}.  Just my ego, but I really couldn't reconsile myself to the fact that the world could go on without ME in it!  I have a family history{father and brother} who are bi-polor and I also have anxiety and sever moods of depression so it has been a mental rollercoaster of a ride!  God is good, though and I am very happy to be alive.  I do feel as if GOD has shot one over my bow also, althought I haven't been as faithful to getting in better shape.  Until my 88 year old mother with two bad knees and a broken hip moved in with me I was doing better at exercising.  I am her 24/7 care-giver so I am changing my diet and have bought an indoor stationary bike....now just have to talk myself into using it! The type of cancer I have is called the "unlucky cancer"{as if ANY cancer is "lucky"] since there is no life style cause, no hormone cause, no DNA cause...nothing.  I do not fit the UPSC profile at  all so I understand the frustration of not getting answers.  For my friend, well, she is just pretending it's all a dream.  I'm just waiting for her to hit the wall.  I am not a positive person, but she is TOO positive, if that makes any sense?!  Thanks again for the info and letting me know about your journey!  This monster is like the Hydra, cut one head off and another apears!  Keep in touch and I will be back!  

 Best, Debra

northa914 said:

Thank you for putting a smile

Thank you for putting a smile on my face!  I'm so pleased to hear you're 3 1/2 years clear.  And isn't denial wonderful?  Of course no one can go on without us, heaven forbid we're taken too sonn!  Your upbeat attitude and strangth are huge in this rollercoaster ride cancer puts us on, and the anxiety and depression you feel makes it extra-daunting.  You're an absolute angel to place your needs aside to take care of your mother, please take care of you as well.  Everyone around you needs for you to survive, which you seem to have done quite well.  

I did have a good experience with the CTCA/Seattle Wellness Center.  I flew up there from Southern California since my sister lives in the Seattle area, and met with an oncologist and a naturopathic doctor.  I still consult over the phone with the naturopath as needed, and am only charged a fee for a phone consultation.  My progress is monitored by measuring my CA 19-9 and Chromagranin A levels once a month.  Since my NET is of pancreatic origin, both are used to determine if my disease is growing or shrinking. I have the cancer that Steve Jobs had, which is how I describe it when people start getting the deer-in-the-headlights look when I tell them what I have.  SO funny that doctors describe cancers as being "lucky" or "better" than others.  That's what happened to me when the pNET was found in my lymph nodes.  The conversation went something like this: "Well, Andrea, unfortunately the cancer has metastasized to your lymph nodes so we couldn't perform the liver resection.  However, the type that was found puts you in a better position as it's slower growing."  Ya, okay, so.... We wasted 2.5 years chasing the wrong cancer, now it's in my lymph nodes, but since it's slower growing I'm in a better position?  Hmmm...since there's nothing I can do to turn back time I'll run with it. Actually I couldn't be too mad at the surgeon because he's affiliated with the liver specialist at Norris-USC that suspected NET in the beginning. And he did give me hope that we could possibly shrink the mets in my lymph nodes and attempt another liver resection in the future.  Unfortunately the regime I've been on for the past six months isn't working, so I need to get a special scan to determine what step(s) to take next.  At stage IV I knew I'd be fighting for the rest of my life and that the best I could hope for was to come as close to remission as possible.  I plan on that life being very long!

 

Take care, Debra.  I hope you're enjoying the holiday season!

 

Andrea

You are a one brave woman...I can't imagine {mentaly]dealing with a stage IV diagnosis! I nearly lost it with a 1a,c. I have been the biggest whinner you ever saw!  With two little boys to mother how in the world did you face that.  I was a mess, but my husband refused to "feed" into my pity-party. Most  all of my children are like their father.  Their attitude was, "ok Mama, get the surgery, get the chemo,get the radiation, and Get over yourself"!  I am shocked that the 2.5 year misdiagnosis didn't cost  you your life.   I know that chemos are different, but did the chemo they were doing for the first diagnoses not help your real cancer?  I have only had Taxol/Carboplatin because they don't have a chemo for me...they treat it just like Ovarian cancer.  Did you have a tumor assay done or genetic testing done?  I  recently found out that I have some Jewish heritage{I do geneology for a hobby} so they did the Braca 1/2 and a Lynch syndrom genetic test.  I'm negitive for all three.   Soooo frustrating to have a mystery going on in your own body!

My friend is still in the "blissfull" stage where the doctors are telling her that the chemo she starts in Jan. is just "insurance" and she really doesn't think the chemo will be important.  She is already loosing too much weight,70 pounds in three months,not only due to the Whipple and just general health problems, but because she is afraid to eat anything.  I don't know, I love to live in "denialland", but I wouldn't like to starve to death.

When will you be getting your special scan? Do they have an idea of what the next step will be? I sure hope you have a good support system.  I wish you the the best, Andrea.  I will be praying for a good outcome for you and your family.  Those little boys need yoou!  Please let me know what happens!  With our eggos, we will live to be a hundred!  Were are JUST NOT DONE yet!  Merry Christmas to you all!  Best, Debra

northa914 said:

Aloha!

Hi Debra,

 

Hope the Holidays treated you and yours well, and that 2014 brings many more wonderful things!  Sorry it’s taken so long to respond.  I was so busy running around for Christmas, and preparing for my boys’ Christmas present surprise.  I’m typing from our lanai at a condo in Maui.  My sister and I planned a trip here for a nine day reprieve from reality.  I would love to live here one day, just a small condo with access to goods and the beach and room for a few visitors.  Oh, and my dogs too!  The cost of living here is expensive, but doable.  Maybe just a dream, but we all gotta have one!

 

Unfortunately only one whole-body chemo showed some success.  The FOLFIFINOX contained irinotecan, which was determined to be of possible benefit when I had a chemo-sensitivity test done on the infected lymph node that was biopsied in May 2012.  The procedure(s) that were most successful were the TACE (I had four of them) where a chemo cocktail was dispensed directly into the tumors in my liver, then sealed by temporarily cutting off the blood supply to that particular lesion.  I haven’t had genetic testing done, at this point we’re trying to get my disease to retreat since it’s so wide-spread.  I hear you about the frustration, to do all of that testing to hear they still don’t know the whats and whys of your disease.  Ugh…

 

I get my special scan (Ga-68 dotetate) at UCLA on January 10^th.  The results will be sent to my primary oncologist and to my specialists at Cedars and USC.  I’ll know more about what direction we’ll go in regarding treatment during my appointment at Cedars on February 3^rd.  I’m thinking I’ll either have to wait for a clinical trial for a procedure called PRRT (peptide receptor radionuclide therapy), or go to Texas for a patient-sponsored clinical trial or overseas where this therapy had been approved for many years.  It’s targeted radiotherapy, and a better way to try and control and/or shrink my disease as opposed to whole body chemo.  I hate not knowing what the heck we’re going to do, but the one of the benefits of living in “denialland” is that I can convince myself that we will find a successful treatment in spite of being infested with disease.  Sounds like a dog with fleas or mange, eh?  J

 

I hope your friend is starting to eat again.  70 lbs in three months, yikes!  Nutrition is very important in the cancer game.  I know organic/fresh fruits and veggies/lean meats are recommended; however, I found that eating those types of foods made me so full so fast that I wasn’t able to take in the calories required to maintain my weight.  I’ve always had the problem of keeping weight on, so I mix the good with the “bad”.  Some time a cheeseburger with fries and a shake sounds better than an organic salad with grilled chicken breast sounds better, or vice versa.  Another reason to move to Hawaii: a lot of fresh fish and tropical fruits and veggies, along with kalbi beef over a bed of rice and Hawaiian shortbread cookies is my style. 

 

I’m off to experience some more aloha.  Hope you continue to keep your chin up!  I’ll let you know what happens with my scan, and thank you sooo much for your prayers!!!

 

Andrea

Soo happy that you are in  Paridiae!  Sorry to cut short....all heck just broke loose!  Will get in touch as soon as I settle the " Drama and Trauma"!  Have fun for me, too!  Debra 

Oneshot said:

hope this helps

To answer your question on what the medication( I'm thinking chemo) that starts with a "G" is. Drawing from my own battle with pc. I would say Gemzar.  And yes to the rads treatment also. Mine was just 35 days though. I was diagnosed with stage 3 pc. in 2008. I haven't been on the boards in a while, But you can check this site under RARE and OTHER/ pancreatic cancer survivors (many pages) . It might give you some insight to share with your friend. If you like you can contact me on this boards e-mail.

Oneshot

Hi oneshot...I sent you a private e-mail, but I'm not sure it went through!  I have tons of trouble with the internet!  Let me know.  Thanks, Debra