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I normally lurk but thought I would come out of hiding. After having disease progression while on first line chemo ( carbo/taxol), I am starting a phase 1 clinical trial with Doxil, Avastin and Torisel at MD Anderson. I was wondering if anyone else is on that combination or has used Torisel with ovarian cancer? I have clear cell which is similar to clear cell renal cancer, for which Torisel is quite successful.
Hanging onto hope,
Teri
Cancer Taxol Surgery Avastin Meditation Breast cancer Ovarian cancer Taxotere Renal cancer Pain Carboplatin Adriamycin
Hi Teri, I cannot answer your questions. But, I just want to offer my support for what you are doing...and of course, my prayers for a good outcome. We are here to hold your hand along the way. It is great to see that new targeted treatments are being combined for our many cell types of OvCa.
I am a great believer in clinical trial participation. I am participating in my second trial, had a good outcome with the first..and a am part way to a good outcome on the second.
I love your screen name. You are indeed a strong woman.
Sheara
I also can't give you any personal experiences with that drug. However, I'm a big proponent of clinical trials and have been on several (including one for a support group with meditation). Good luck and God bless!
Linda
Thanks for the kind thoughts. Ironically, TealOak is the name of my kennel. Never could have guessed how appropriate it would be. sigh.
Teri
I had 6 months of carbo/taxol when it stopped working raising my declining CA125 from 60 to 219. I was started on Doxil alone and have just had my 2nd infusion .. don't know my stats yet but the side effects of Doxil for me have been at a minimum so here's hoping the same will be for you. I did however gain a swollen abdomen to match the size of pre-surgery which occurred during (2) 6-week drug breaks and is most uncomfortable. I am told chemo dries this acesties up so my timing without it let it go bizerk! So keep to your schedules and I am sure you will have a favorable outcome. Sorry I am not familar with the other drugs you mention.
I have had 9 rounds of carbo/taxol, 2 rounds of
taxotere, 1 of arimidex, and 9 rounds of doxil.
I have not reached remission yet...diagnosed in
Oct 2007...of all the chemo, doxil has been the
easiest to tolerate however my side effects have
included a swollen tongue, swollen gums, and lesions
under my tongue. The women in my ovarian support
group all agree that Doxil is the easiest chemo...
I will go on another chemo at the end of the month.
Waiting and hoping for remission.
Dear Songbird49:
How's your Doxil monotherapy going? Did your 3rd yet? Is yr CA125 down by now? Would like to hear why yr Onc decided with the Doxil monotherapy, instead of carbo-doxil (as the clinical trial phase III going on)
Cheers, thanks.
Songbird49, I too am on Doxil and carbo every 4 wks and after the 2nd treatment developed acities. Went away with the rest of the chemo. Will be having my 5th chemo on Tues. Will have a total of 6 treatments with the two drugs and then 6 months of just the Doxil. After the 3rd chemo my CA125 was 10. I was diagnosed 9/14/06, Stage 111c. Started with Taxol and cisplatinum and was on avastin study at the same time. I guess I got the placebo. I still believe in doing the trials. My 2nd round of chemo was Gemzar , did nothing for me. Within 5 months it was back again. As you said the side effects are not bad that is nothing I can't deal with. Good Luck to you. God Bless Quilter
I was thinking of going on Doxil because I am afraid of having a reoccurence and I dont want to risk it. Does it make you lose hair?
Hello,
Just joined the group and noticed your message. I am in a clinical trial with Torisel, Carboplatin and Taxol currently. So far some success in halting the disease.
I will share more later as I am interested in your progress and learning about the other drugs.
Soon,
Patti
Hi Teri,
I just came back from MD Anderson with a possible OVCA recurrence diagnosis. They gave me the information about your trial. How are you doing? I would appreciate any information about this trial. Thank you
Elmira
I posted earlier this week my first results ( look for CT & phase 1 results). After 6 weeks my liver mets have decreased 26%; all lymph nodes have decreased and no new cancer was found.
Side effects have been annoying but tolerable. Biggest issues have been mouth sores and a very, very itchy rash. My counts have stayed normal although platelets do drop but mine have been high so now they are normal. I did have to start blood pressure and cholesterol medication as they both rocketed up but it was expected. Fatigue hit me last week for the first time.
I know this trial was having a lot of early success with ovarian cancer including patients heavily pre-treated. I have only had first line chemo but my Gyn-Onc felt this trial had much more to offer me than single agent cytotoxic therapy ( I am platinum refractory) and even more so than the VEGF-Trap/Taxotere Phase 2 trial. My Gyn-Onc is Dr Ramondetta ( at MDA) and then now I see Dr. Tsimberidou in the phase 1 clinic. The phase 1 team also tested my tumor for various mutations and found, for example, that I am positive for PIK3 which is consistent with clear cell and means that Torisel should, in theory, work on me.
I have a cervical patient friend with the same Gyn-Onc who started the trial who just started her second cycle ( I just started my 4th)--she will be re-staged in 2 weeks so I will learn how she is doing ( stage 4 cervical).
If I can answer any questions at all, just let me know. Was this a second opinion?
Teri
Just had a PET CtScan done and all was good except for a suspicious area in the lower part of my abdomen. Report says could be inflammation from surgical clips or metastatic disease. My doc says that he thinks it is inflammation because all my blood work is excellent. MY CA125 is 7. Have just finished my 6 treatments of Doxil and Carbo and have started 6 more of just the Doxil. I have been loosing hair just thinning out but have not gone bald this time. Better to just go bald and be done with it. I go to the Florida Cancer Institute in Orlando, Fl.and am very happy with the excellent care I have received. My Dr. G. Bigsby says that should it come back, but is hopeful it won't this time, he will put me on Avastin. I was on this study in Oct 2006 but obviously had the placebo then because the cancer came back. I had been getting Taxol and Cisplatinum at that time. Good Luck and God Blessings to all.
Thanks for the information on the clinical trial at MD anderson. These trials are fascinating as they both are looking at new ways to attack the little buggers by cutting off their blood supply, and also by using the DNA interrupter type chemo along with the avastin type treatment. Those of us whose cancer appears to be resistant to chemos have perhaps more options to buy us time.
I've been in touch with the national cancer institute about a trial using two drugs cutting off the blood supply to the cancer cells. The study is a phase II and the phase I apparently looked quite promising. The more time we can buy with our treatment, the better chance we have of being around for a great breakthrough. Good luck to all in clinical trials and we all hope for a long remission no matter what treatment route we take.
Hi
My mom has breast cancer with lung mets. Her cancer is metaplastic and squamous cell so they are going to try this combination of doxil/avastin/torisal on her. There are only two other breast cancer patients in the trial so I thought I would ask you all how it's going.
2 weeks ago we were preparing to go home with no more treatment options and this study popped up. I'm hoping this is the miracle to buy more time that we were looking for.
Teri,
Quick question for you. My mom has had cancer for a couple years and at MD Anderson since January. They are starting this same trial for a very rare form of breast cancer and there are only three of us. Even after 6 different types of chemo's mom is for some reason extremely nervous about starting this. I think it's becuase it's new people, new oncologist all that. Do you all get your chemo in Mays clinic like we always have? We don't have all our appointments yet and I'm just trying to reassure her.
Marieta
Marieta,
I understand your mom's concern with having an entirely different team. The phase 1 team has been nice to work with, but I certainly still miss the gang in Gyn-Onc.
I have had chemo at Mays and at the Main building--if you feel more comfortable as Mays, just request it from the trial Nurse. The rooms are nicer at Mays; TV's are larger and they have the DVD player in each room--main building only has small TVs.
Supposedly this protocol is one of the easier to handle although for me it has bee much tougher than I anticipated. I have been overwhelmed with skin issues--mouth sores, anal sores; hyperpiggmentation and sores about the diameter of a pencil that are all over and itch. Course nothing heals, so some of the sore I have had since the first week of July. My feet are the worst and have really impacted me the past month or so with nail loss and skin degloving.
My bloodwork has remained fairly normal with the exception of needing blood pressure meds and cholesterol meds. Pain & nausea have been almost nil. Fatigue has only recently been an issue. Last week my skin lesions were bad enough that they pulled me from chemo for last and this week. Tomorrow I have a restaging CT and will make a decision next Monday about continuing the trial.
In the first 12 weeks I have had a 46% decrease in my tumors in my liver and retroperitoneal.
As I said, I think my side effects have been some of the worst within the study and they are bearable, albeit tiresome and seemingly never ending.
Let me know if I can help in any way.
Teri
Teri,
I'm so sorry...it's been a huge issue for both mom and I. Do we choose quality over quantity.
Her cancer is very end stage and although I have been strong through it all watching the end stage symptoms come on has been tough.
She starts the treatment Wednesday and she is really a mess and scared more than I have ever seen her.
My mom is so tough and has perservered through all of this but she knows and I know that this one is not going to be easy.
I'm afraid that her symptoms have progressed too far for this to work and I don't want to put her through this torture.
She has been extremely chemo tolerant in the past and the last course of Ixempra was the toughest she has ever had. She is very small anyway and the mouth sores and inability to eat has been an issue.
I sent you an email at your personal address.
I really hope that you feel better and if you need me to fix you the BEST high calorie ice cream shake you have ever had you are welcome to stop by.
Marietta
Thanks to all you ladies for the information for once again amazing me with your fortitude and knowledge.
There is something new for the mouth issues, just approved on the UK market, Mugard I think it is called and supposedly good for mouth sores, etc.
Is Doxil the drug you ice your hands and feet with while getting it? For some odd reason that alarms me more than anything,,I guess I have cold feet all the time.
Teal Oak,,my favorite color has always been teal, when I wear it people exclaim "teal is your color". Isn't it odd that here I am in the teal section? LIke your teal kennel.
Seooy:
what is an "interruptor-type" chemo???
Any of you taking doxil who have previously had
adriamycin? I had maximum amt w/BR CA 20 years ago and assumed I couldn't take doxil????
Mimi
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