Already had Gemzar stopped working - only one option being offered

I have stage IV Pancreatic Cancer and I was treated with a Chemotherapy of Gemzar and an experimental drug.  However, the chemo only worked from January to the end of June. By the middle of June the tumors in my lungs started growing and more and there were new ones and there was a new spot on my liver so I was taken off of the study.  So now I am being told that I am in my second line of defense with the disease and the doctors are telling me that that my cancer is very aggressive and even harder to treat because my body has been exposed to the Gemzar.  At this point, the only thing I am being offered is a drug called Fulfox (not sure of the spelling) but this chemo is a lot more toxic and only works in 20% of the patients and it usually causes numbness and possible nerve damage in your hands and feet.  I was told to "shop around and see what else is available; if there are any natural alternative, clinical trials or anything that anyone know might work for someone who has had Gemzar already and is in their second line of defense with this disease.  I am a 50 year old female and I don't want to die.

If anyone knows of anything I would really appreciate it.

Sincerely yours,

hi just read about something new: check out salirasib; i get a lot of info on a site called      : medical news today, they email me every new info every day!

onlynphilly,

First I'd like to say how sorry I am for what you are dealing with at this time.  Pancreatic cancer is a terrible disease.

It seems unusual that your doc has sent you out to findyour own treatment; isn't that carrying "be your own advocate" a bit too far?  Why isn't that his job, to seek out the best treatment for you?  There are other treatment options available since no one protocol works for everyone. 

You would be wise to go to one of the several outstanding pc treatment institutions in the US for a second opinion since your oncologist has abandoned you.  Consider M. D. Anderson in Houston, Johns Hopkins in Baltimore or one of the best, Dr. Robert Fine @ Columbia in NYC.  The docs at these hospitals have dedicated their lives to treating pc; it's all they do.  They are life-affirming and they will not abandon you.  

There is an excellent online pc support board maintained by Hopkins; there are both patients and caregivers who are willing to share their knowledge and support.  You might visit and post your question there; I'm sure you will get multiple thoughtful responses from people who have been where you are.

Please consider the information I have given to you.  After all, this is your life we are talking about.

Good luck and God speed.

Joan L   

Hi  My mom was diagnosed the end of April with stage iv pc.  It has been a long 3 months.  She originally went in local hospital with what they thought were gallstones and plans to remove her gallbladder was in motion, She was transferred to a bigger hospital in case there was other items that may need looked at, this hospital has alot of cancer pts.  Within 30 days (of being hospitalized) we went from gallstones to stage iv pc which after reading up on was very devasting for us.  We were bluntly told that what she had was inoperable and there was no cure, they gave her 6-12 mos to live, that is if she had chemo to possibly slow it down and make her comfortable.  My mom was started on gemzar with no bad side effects, felt like a new woman (as far as the constant pain in her back) for 3 days.  Then the constant vomiting started which landed her back in the hospital (where she currently is but should come home tomorrow).  We are seeking a second opinion from MD Anderson (if they will accept her).  Does anyone have any info on how often they turn people down after reviewing all her current test results??  Just needed to vent and ask for as many prayers as possible that my mom gets to go to MD Anderson to see if they can save my mom.  Jeanne

Our thoughts and prayers are with you! Our 22 year old daughter has been receiving gemzar for three cycles over two months as an experimental drug, combined with taxotere, for advanced angiosarcoma of the head and neck. The tumor is in her oral cavity and throat. It's very visible and the size of a large grapefruit. November will be three years since she was diagnosed and her birthday is Friday July 23rd. After a week of radiation the tumor was growing daily. Originally the gemzar combo was slowing the growth and breaking up the tumor. After the last cycle last week it's growing again and we appear to be out of options. She's had several other chemos, including taxol, also experimental for. Her because it's a breast cancer chemo. It's very difficult to tell what the result from the gemzar Is because she's had so many therapies and her 'remission' period is cut in half everytime she receives chemo. Does anyone has used gemzar for something similar or knows of any other solutions for such a large, aggressive head and neck sarcoma? We are runnng out of time quickly. Amiee's parents It's hard for us to tell at this point what complications are a result of the gemzar because she's had so much therapy And her

 

On 7/23/2009 Harrietg. wrote:

hi just read about something new: check out salirasib; i get a lot of info on a site called      : medical news today, they email me every new info every day!

 

Thank you I will investigate it.

I am so sorry to hear of your diagnosis. I've experienced the same feelings and fears but from the other side, as a caregiver. Several things you should know. Most of the experimental therapies and studies are with Gemzar and another drug. Many hospitals use the triple cocktail of GTX, Gemzar, Taxotere and Xeloda to slow progression of this disease. From my understanding, these drugs can be mixed and dosed differently to "fool" the cancer. That said, I would try to find a second opinion very quickly. This cancer does not like to be ignored. I can perhaps offer two possibilities. My husband was a patient of Dr. Robert Fine of Columbia Presbyterian. He has been credited with the GTX cocktail and does a great deal of research. If your liver is able to metastasize chemotherapy drugs, you may very well be a candidate. You should call him: 212/305-1168. He only sees patients twice a week. Also, I have a contact at Johns Hopkins. He runs the pancreatic cancer center. I have started a foundation and his center will receive all the funds that I raise. He might be able to supply a second opinion if I ask. MD Anderson might be a great option as is Memorial Sloan Kettering. However, the doctor matters. I had a great deal of trouble trying to procure an appointment. Make sure you have your most recent CAT scan or PET scan. Also, you will need your complete medical records. If I can help further here is my foundation website: www.turpinfoundation.org One last piece of advice. If you have family or a close friends who can help make calls etc., ask for help. You need help with faxing, taking notes, calls. It's okay to lean on people, especially during such a stressful time. And if you can, try to find someone; a therapist, counselor, cleric you trust. It does help to have someone to talk to and share your feelings. Don't go through this alone.

Tarceva was recent approved for panreatic cancerv. Patrick SWwayz took/takes it. I have read of people taking Tarceva for afew years. I took it for 7 mos and it worked well I thijk ou need a ew group of congologists. I was totally allergic to gemzar and could not use it Keep up the fight good luck

Roxann,

I was interested to read that you had difficulties with Gemzar. My husband had a terrible time. He had 11 infusions and that was it. He had swelling ( added 40 lbs. of fluid ), required 4 transfusions, had breathing difficulties,was soooo tired. He stopped this in May and still has some difficulty. What a mess!!! Make us afraid of chemo.

 

Karen 

May God bless you has you search for the right drugs for you.