Topic: Questions for anyone that can help

Hello and Good day to everyone,

I was diagnosed last July and after five months of chemo: cisplatin and gemzar for the first two and than the following three I was on gemzar and xeloda.  After the five months my cancer did not spread so my doctor decided to take me off the drugs to dry to determine if it was a slow moving cancer or if the chemo was keeping it from spreading.  After going off the chemo my blood counts had went up for a little while but they are now slowing falling again.  My doctor assumes my platlets are being absorbed into my spleen for that is enlarged also.  HAS ANYONE ELSE EXPERIENCED BLOOD COUNTS DROPPING WHEN NOT BEING ON CHEMO! 
After having three ercp's and two liver stents placed  I was told i was going to get into a clincal trial at a larger hospital, after working with the doctors for about a month they told me since my platlets were under 100 they could not administer the trial:(  Im back at square one with my doctor and she has told me all they really have left to offer is to go on xeloda.  Im so very confused on this being my last option!!  So im working on a referral to Mayo in Rochester.  Has anyone had a similar experience or have any suggestions on what I can do next.  My time is running out i have been becoming more nauseated , have been loosing more weight, and at least once a week i end up vomiting.  Im getting so frusterated and Im starting to loose hope in my doctors!!!!  HAS ANYONE HAD SIMILAR EXPERIENCES OR HAVE ANY ADVICE IM NOT READY FOR THIS TO BE MY LAST OPTION!!!

Thankyou everyone
Tiffany

2 (edited by glightfoot Mon, 11 May 2009 15:30:59)

Re: Questions for anyone that can help

Hi Tiffany,

Getting a referral to Mayo sounds like a great step to take. Get second and third opinions. I think they should be offering you alot more options!

There are quite a few chemo drug combinations that people have had on this site as well as other targeted drug therapies like Nexavar and Avastin. There are also radiation treatments like sir spheres and theraspheres.

I hope your doctor can provide your with anti-nausea medications in the meanwhile.  I know how despiriting it is to be losing weight,  but that can be controlled with the anti-nausea medications and also there are medications to stimulate the appetite.

I hope this helps,

G

Re: Questions for anyone that can help

Tiffany...As G has mentioned please, have other physicians look at your records, blood tests, scans, physician's reports, etc.  Being that you are only 25 years old you have youth on your side.  I would not take the above reference as my last option, yet.  Please, let us know if you would like to receive some referrals from the patients on this board.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Questions for anyone that can help

Tiffany, are you anywhere near the Mayo Clinic in Rochester, MN?  I would have them take a look at my records and get their opinion.  They have experience with this cancer and cc patients. 

Good luck!

Re: Questions for anyone that can help

Tiffaney,

May I ask what exactly is a erpc?  I do believe second opinions are a MUST!  My husband's first doctor wanted to begin chemo right away and offered no hope with or without the chemo.  We went to the Cleveland Clinic and was given a whole different senerio (much better/hope/options).  He has now been considered a candidate for surgery.  I will keep you in my prayers...

Karen

Re: Questions for anyone that can help

Karen.....Endoscopic Retrograde Pancreaticocholangiography (ERPC). 
This is the link to Wikepedia:    http://en.wikipedia.org/wiki/ERCP
Quite informative. 
Glad you asked this question.
Good luck,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Questions for anyone that can help

Karen...this explains ERCP in simple terms:
ERCP. The doctor inserts a flexible tube down the person

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Questions for anyone that can help

Thank you Marions for the explanation.  I'll visit the site for sure.  Tiffaney,
is your referral to Mayo going?  Keep us posted and your in our thoughts and prayers!

Karen