ovarian cancer

dx sept 2007 first round taxol and carbo, ca125 went to 5....six months later up to 50 startedon taxol carb doxil (one of them I go Ip0 remission 5 months. relapse carb, taxol, avastin (37000 a month just for that) every omnday for 21 weeks until i got chemo toxic...no short term memory-went to hosp for 6 days,dont remember, had kids over for dinner and lunch-dont remember..lost days...Im a nurse so had to stop working. now taking 1/2 less taxol as maintenance dose, with prn liters of saline in attempt to defray neurologic side affects. My sister and I are BRACA1, I really feel like the genetic approach is our only hope. However we live in bum pluck alaska.......its like pulling hens teeth getting any infomation, its been almost 3 years and I just found out that there is a clinical trials "office" somewhere in the bowels of the new cancer center in anchoragel. So frustrating...No one has asked me hows my nutrition lo Ive lost 60 pounds and eat once or twice a week, I cry more now that I did when first dx and yet no one asked me if I need a counselor..your really on your own. The sad part of it is that Im an experience ER/Med surg nurse...I SPEAK the lingo and I still have a hard time advocating for myself. My sister and I are going to see the cancer treatment center of americca in airzonea (sp) this summer in hopes of getting some info for a high quality of a life. My sadness increases each day for the grandchildren I have and the ones I havent seen born yet. I just dont want to let do. Im so so sorry so many of you have pains like this, as a nurse I had no idea of the sleepless nights and the sorrow thinking of your loved ones, forgive me.

 

hi colleen! dont know y i didnt see this post til now! if u've been reading the "chemotherapy" posts, u'll know that a lot of those gals r taking gemzar at the moment with good results: could u maybe go to arizona asap? u dont want to wait 2 long! did any m.d. ever suggest u r platinum resistant? i'm no doc, only an informed "victim"! u have to try & stay POSITIVE, WATCH FUNNY MOVIES, there is definitely a "laugh therapy"! no sugar, healthy veg & fruit, fish (it must come from there!), vits......u may not give up yet! hang in there! harriet

Just read your post.  This disease is horrid, I constantly wonder what happened to the person I was prior to this diagnosis.  I work hard at staying POSITIVE and keep my fingers on the keypad looking for information.  I was diagnosised Feb 1, 2008, 7 rounds of carbo/taxol, debulking surgery and 3 more rounds of carbo/taxol.  Remission for 5 1/2 months and BAMB here we go again.  I am doing just AVASTIN have had 2 treatments and my oncologist wants to more rounds before we do any testing to see where I am....I have a 20 year old daughter who is an only child.  My biggest fear is leaving her all alone! On September 21st, 2008 I was at a very low point and I ask GOD to please just heal me because I am so tired! I heard him loud and clear tell me I was healed.. I believe it, so this recurrence is just a bump in the road.  I'm a fighter and I'm determined.  God said it so we are going to do it!  I promise to fight till the bitter end.  There are lots of trials going on.  I want to be a part of one of the vaccine trials but you must be in remission so that is my GOAL, get in remission and go from there.  Know you are not alone, make yourself eat, your body needs protein to heal, say off the sugar, limit your red meat, but EAT.  Your a nurse, you know...find that one thing that taste pretty good and go for it.  It is better to carry a little extra weight during these bleak times....because there are going to be those days that you just can not get it down.  Ask your doc about depression medication, if they haven't prescribed it already then tell them to do it NOW.  I told my doc I don't need that and she said "YOU WILL" and you know what there are days that she was oh so correct!  Hang tough and know that you are not here alone.  There are lots of us with this horrid, nasty disease!  deb

My heart goes out to you, Redboots. Never loose faith in a positive outcome. Anything is possible. You might have seen the CancerCompass News article of Assistant Professsor Perez's research on Nanoparticles targeting and delivering a killer drug to only cancer cells. As a consequence, no side effects and no harm to health tissue. The article is entitled, "Nanoparticles Could Someday Lead to End of Chemotherapy". True, that is in the future, but I keep thinking that everyday I can stretch out my life another few months, a cure is right around the corner waiting to be discovered. If I keep in the race, I'll be there to benefit the new discovery. A woman here at UC San Francisco has breast cancer, stage 4 which spread to her lungs. She went through several failed attempts at treating her metastasized cancer. She then enter a clinical trial using Avastin and Tarceva in 2003. She received a daily pill and intravenous infusion every three weeks. Her tumors began to shrink right away, and continued to decrease in size one year later. In 2004, she only had three tiny nodules remaining. She writes, "July 23, 2005, I completed my second year in the clinical trial." July 23, 2006, she wrote, "It has been almost 3 years now and I am still doing all the above." July 26, 2007, she added, "On July 23rd, I completed my 4th year in the clinical trial. I am doing very well and continue to travel and enjoy my family and friends. July 24,2008 "Today I started my 6th year in the clinical trial. I am doing great!" Two months ago (March 2009), I met Heraleen at the UCSF infusion center when I was having chemo. She is still in the study and doing great. We are talking about a 6 year extension of her life with the original diagnosis of Stage 4 Breast cancer which metastasized to her lungs. Can you imagine! I'll tell you Redboots, anything is possible. Just don't loose faith! (She gave me an article which was written about her entitled, "Team Celebrates Breast Cancer Patient's Remarkable Turnaround." So, I do not feel that I am betraying a confidence. In fact, I would be like an evangelist spreading the news about two drugs that have saved my life, just like Heraleen. I have ovarian cancer also. Mine was diagnosed as Stage 3C, high grade. That was July 2007. Surgery, Chemo then remission of 8 months. Then CA recurred Dec 2008. I am now in my second round of chemo (Carboplatin & Taxol). The CA124 is 281, last checked June 10th. I mention the combination of Avastin & Tarceva and the story of Heraleen Broome with her breast and metastasized lung cancer because I am going to speak to my doctor about the possibility of this maintenance therapy. It is working for Heraleen and there appears to be no developed resistance to the drugs after six years. I am looking for maintenance therapy. I do not like the idea of once in remission, one must then sit and wait for the cancer to raise it's vicious, parasitical head to once again use my body as it's host. Grrrrrr! I entered into Google, Tarceva & Ovarian cancer. Then Avastin & Ovarian cancer. There are trials for us ovarian cancer patients using these drugs. I hope my doctor can qualify me for something in that type of drug category. They are not in the platin group, which eventually patients develop a resistance. Keep us posted on your welfare, dear Redboots. Stay strong!

 

On 6/24/2009 sfokyh wrote:

My heart goes out to you, Redboots. Never loose faith in a positive outcome. Anything is possible. You might have seen the CancerCompass News article of Assistant Professsor Perez's research on Nanoparticles targeting and delivering a killer drug to only cancer cells. As a consequence, no side effects and no harm to health tissue. The article is entitled, "Nanoparticles Could Someday Lead to End of Chemotherapy". True, that is in the future, but I keep thinking that everyday I can stretch out my life another few months, a cure is right around the corner waiting to be discovered. If I keep in the race, I'll be there to benefit the new discovery. A woman here at UC San Francisco has breast cancer, stage 4 which spread to her lungs. She went through several failed attempts at treating her metastasized cancer. She then enter a clinical trial using Avastin and Tarceva in 2003. She received a daily pill and intravenous infusion every three weeks. Her tumors began to shrink right away, and continued to decrease in size one year later. In 2004, she only had three tiny nodules remaining. She writes, "July 23, 2005, I completed my second year in the clinical trial." July 23, 2006, she wrote, "It has been almost 3 years now and I am still doing all the above." July 26, 2007, she added, "On July 23rd, I completed my 4th year in the clinical trial. I am doing very well and continue to travel and enjoy my family and friends. July 24,2008 "Today I started my 6th year in the clinical trial. I am doing great!" Two months ago (March 2009), I met Heraleen at the UCSF infusion center when I was having chemo. She is still in the study and doing great. We are talking about a 6 year extension of her life with the original diagnosis of Stage 4 Breast cancer which metastasized to her lungs. Can you imagine! I'll tell you Redboots, anything is possible. Just don't loose faith! (She gave me an article which was written about her entitled, "Team Celebrates Breast Cancer Patient's Remarkable Turnaround." So, I do not feel that I am betraying a confidence. In fact, I would be like an evangelist spreading the news about two drugs that have saved my life, just like Heraleen. I have ovarian cancer also. Mine was diagnosed as Stage 3C, high grade. That was July 2007. Surgery, Chemo then remission of 8 months. Then CA recurred Dec 2008. I am now in my second round of chemo (Carboplatin & Taxol). The CA124 is 281, last checked June 10th. I mention the combination of Avastin & Tarceva and the story of Heraleen Broome with her breast and metastasized lung cancer because I am going to speak to my doctor about the possibility of this maintenance therapy. It is working for Heraleen and there appears to be no developed resistance to the drugs after six years. I am looking for maintenance therapy. I do not like the idea of once in remission, one must then sit and wait for the cancer to raise it's vicious, parasitical head to once again use my body as it's host. Grrrrrr! I entered into Google, Tarceva & Ovarian cancer. Then Avastin & Ovarian cancer. There are trials for us ovarian cancer patients using these drugs. I hope my doctor can qualify me for something in that type of drug category. They are not in the platin group, which eventually patients develop a resistance. Keep us posted on your welfare, dear Redboots. Stay strong!

hi! there is a trial out there for tarceva; the problem is, does it work? i have a friend who did it 3 yrs ago, & it didnt for her!i was sposed to be on it but got the placebo! it works on the egfr(?)cells, avastin on the vgfr(?)cells, so with both u would cover everything! the girls on the "chemotherapy" post r mostly on gemzar w/ good results (see p.4 of ovarian); i myself 3 small lesions on the outside of the liver which will be treated in 2 wks w/ tomotherapy: hope i have less side effects than w/ chemo! this is after 3yrs of ned; just stay positive! wishing u all luck, harriet