Doxil not working, need my Cysters.....

[A Rebel Spirit]

Hello Cysters,

I got home Friday after my 5th trip to Cancer Treatment Center of America. My CA 125 has gone up a total of 95 points in the last 2 months. It looks like the Doxil is not working for me. They redid my CT scans last month and the lymph nodes have grown 1/3rd of a centimeter. Not much, but growth nonetheless. I have been pretty depressed about this. My next visit is the first week of May. They will redo the CT scans again (a month earlier than originally planned) and probably change my chemo based on the CT and CA 125 results. My sister is going to try to go with me so I won't be alone this time. I need your prayers and support right now cysters. I don't post often, but visit and read almost daily. I need someone who understands, who has "been there" like all of you. My family and significant other are loving and supportive, but most have not had cancer. My sisters have both had cancer, but have never had a recurrence. The only one to have a recurrence was my brother. We lost him almost 2 years ago. I'm not afraid to die. My faith is strong and I know where I'm going. But I'm not ready to die. I'm 46 years old and I have a lot of things I still want to do. I've been fighting this monster for 13 months now and I'm tired of it. I want to get on with my life, healthy and strong.

A Rebel Spirit aka Susan

[LidoGal]

I will keep you posted on my progress and effects of VEGF-Trap.  I have just had preliminary tests done (CT-scan, incl. of head; ECG; ultrasound and all).  I had hoped to be in this study in December, 2006, but was then turned down because I had not had enough "traditional" chemotherapy, I was told.  So then I started Doxil in January, had three treatments, and am just now off of the Doxil.  Some of the (possible) side effects of the VEGF-Trap are daunting, but this is true of a variety of the treatments for OV Ca.  One cannot do nothing, I feel, or the cancer will progress.  I am getting all of my treatment at a major Chicago hospital--my husband drives us there from Indiana.
     Last year I started in a study and was getting Irofulven (chemo).  I had terrible constipation after each infusion (only had two).  I was then hospitalized for a week with a bowel blockage--very scary.  Still, I am willing to give the VEGF-Trap a chance.  My oncologist tells me that studies have shown good results with this treatment.  I am hopeful (but I know that each person does not have the same result).
     I am thankful that my grandmother lived with us (when I was in 5th, 6th grade).  I saw her courage and a good outlook in spite of a serious heart ailment--how she lived her daily life.  My mother had a coronary at 70, continued to live in her 1900 vintage house, also had a positive outlook.  My brother, who just passed away in January, is my hero.  He battled cancer (testicular, then prostate) for 19 years.  He and his wife lived in Arizona.  He and I talked by phone--and also by email--several times a week.  He enjoyed life and took every opportunity to get the best treatment he could over the years.  I am thankful for every day I am given.  I'll be 72 in May.
     Love to all of you who are dealing with this cancer.  
    

[Jatoo]

Right now there is a clinical trial of Sorafenib and Avastin in Chicago with NCI. The success rate of this combo is excellent which I posted before. I will take this drug combination anytime. There was a patient who flew from Arizona to Maryland every two weeks for 20 months just to be in this trial. It did her a lot of good in the sense that it shrunk a lot of her tumors.

Right now if the Avastin/Gemzar were to stop working for my wife, I will recommend switching Gemzar to Sorafenib while retaining Avastin.

Jatoo

[Gatsby]

Hey sis, you know that we are here with you every step of the way.  You are so brave and strong and you are fighting the good fight.  Keep that Rebel Spirit!!!!
Love,
Tascha

[Tandy]

Dear Susan,   When I dsaw your comments I thought - don't you dare get depressed!!   Here in Scotland it simply is not allowed!   I to received bad news two days ago but my oncologist was so pleased with me as I did feel fairly well and I always try to be upbeat, not easy I know, as I feel sure this help them help me.   I have had this cancer since April 1998 and last year my oncol. say we were coming to the end of the road for things to try and low and behold the etoposide/cisplatin worked.   The side effects for me were really bad but I had been so ill with a bowel blockage they held out little hope for  me on top of the fact two chemos had failed to work for me.   There is always hope and with God's blessings you will do a lot of damage yet, at least that is how I feel.   You are right it is difficult for anyone who has not had cancer, or a recurrance, to understand how you feel but you can be sure on this site you will find others going through, or been there, the difficulties you are experiencing.   A worry shared is a worry halved so post when things get difrucult and don't carry the whole load some of us can and hopefully will help somehow.
God Bless and my prayers are with you
Helen Jane

[LidoGal]

I sent in a comment last month (my first one).  I have OV Ca IIIc......and was on Doxil since January.  I had three treatments, would have had fourth this week.  I am now off the Doxil because it was not bringing about improvement.  My CA-125 had risen last week (I think the numbers were 74 and then 112).  We had already looked at and discussed possibility of experimental drug,
VEGF-Trap.  I am now in that study and was told that patients are getting very good results with this drug.  I just looked on Internet and found that many cancer centers have patients trying this therapy.
     I am sorry that you, too, are involved with the OV Ca.  There are many treatments available.  Get the best medical help.  You are in my prayers.

                                                            LidoGal

[Jatoo]

Hello. You probably are the first one on this forum to use VEGF Trap. It was offered to us before but chose Avastin (works similar), although was kicked out of the trial before we started.

It would be great if you can give us a regular update on this drug. This will be one of our other options beside Sorafenib in the future. I have read excellent results on both VEGF Trap and Sorafenib.

Wishing you all the best,

Jatoo

[SimplyStar]

Leslee's trial will be Topotecan and Lapatinib { Tykerb} , at this time they do not want to do a peel, surgically.  3 small lesions, abd wall.  It is a Phase 2 trial.

[ticked]

I am so sorry to hear that you are going through this. I will be praying for u

[Jatoo]

That can be an excellent combination. It was first offered to us and it was not even on a clinical trial, although we opted for Gemzar/Avastin (Bevacizumab) because earlier my wife failed on Topotecan alone. But adding Avastin could have been another story.

Wishing you all the best,
Jatoo

[freshair]

Hi Susan--while I was checking out clinical trials I thought of you. Check this one out since topotecan will probably be your next suggested chemos.

http://www.clinicaltrials.gov/ct/show/NCT00343044?order=2

[freshair]

Dear Susan,
I feel bad for you and on your family history. This is so difficult when we try a drug and it doesn't work. Doxil didn't seem to work with me last summer. My next one was Taxol (low dose meaning I got it once a week for 3 weeks with a week off) It kept stable and then I became resistant to it.

What I read about the Vitamin C trial at Cancer Center of America is that they were going to use it with women that had no other options.

You may want to check out clinical trials that look interesting and promising to you. Such as the one Jatoo posted. Unfortunately for me a lot of the trials are not offered for me because of either being hypothyroid or having brain mets or that I now have had too many chemos. Be aware of that--when you have had too many chemos you are excluded from some.

Best of luck. I know its depressing but I think we're all going to see a rebound in that Rebel Spirit of yours.

:) Helen

[Best59]

Hi Susan, Thank you to share with us, how you feel. I'm 48 years old. I have a feeling, you will be here for a along time.... Do not give up! I know it is hard to do, but try to concentrate to the positive things! Your brain will forward positive signals to your body. Try to be with your loveones, don't be alone! We are here for you, think about you every day! Hug, Sue

[PPhelps]

http://pathology.jhu.edu/N/n.web?EP=N&URL=/MCGI/SEND^WEBUTLTY(15723)/690679070

This link is to the search engine at John Hopkins, type in Doxil. There is alot of discussion on Doxil.

[Jatoo]

Dear Susan:

Sorry for this news. But don't lose hope. I already prayed for you. My wife was also on Doxil and it stopped working. Now we are on Avastin/Gemzar. But I want to relate to you a post of another patient in another forum where I go to. There are so many good news there on people using Avastin, Sorafenib and now VEGF (Vascular Endothelial Growth Factors) Trap.

"Ladies

I generally lurk, sometimes don't even show up, but did want to share a clinical trial with you all. I am on VEGF-trap. It is in the same family as Avastin. I have been on it for about 6 months. My CA125 has gone from 533 to 156. A very gradual, consistent downward trend. I have ovca in my liver and in my lymph nodes. All tumors have either decreased in size, density or remained stable. No increase of disease. I have injections every other Thursday. Mild to no side effects. I am on blood pressure meds because of the drug but it is very much under control. This trial is closed to acruel, being examined by the FDA, and is expected to open again soon. I am located in Seattle with plenty of spots available when the trial is opened again, however I have heard there was a waiting list at Sloan Kettering. Must be platinum resistant and failed Doxil. Please email for anymore info, be happy to share. Most clinical trail coordinators at the major cancer centers can give you information. Instead of trying the Internet I generally just call the center, ask for gyn oncology, then ask for the clinical trial coordinator. I find them to be very helpful and very very wonderful.

Wishing everyone well. "

Her email: Nancy Buhrman- ***@****

I hope this helps.

All the best,
Jatoo

[rmarie]

they are starting a new immune treatment for ovarian cancer at those cancer centers.  See if you qualify, and there maybe something else that will work.  There are a number of other drugs and trials.  Good luck

[lucymullis]

I want you to know that I am thinking of you and sending prayers your way.  Thank you for your sharing and giving me the opportunity to be there for you.

[SimplyStar]

Susan,  I don't know much about Doxil but I did go in to their site and read all they said,  it keeps repeating the same things  , especially about not worrying about the rise in the CA125.  I read, I think, somewhere about  the Treatment Center being one of the places that are using the Vit C infusions,  Have they mentioned this to you?  I am sure you are depressed about what in the beginning you were so excited about.  Keep the faith,  and know that many are praying for you to beat this and return to health.  I know you are a fighter because of your nick name, Rebel Spirit.  As Jatoo says all the time, if one doesn't work, there are hundreds of other things to try, till they find the right one.