Anybody undergoing maintenance chemo?

[Jatoo]

Dear Friends:

My wife will soon be finished with 6 rounds of doxil after recurrence. Her CA 125 has been normal for like 6 months now. We thought of a maintenance chemo to prevent recurrence. Anybody out there having this experience now? Any ideas would be greatly appreciated. Many thanks.

[fighter11]

Hi everyone,Iam 39 and have had Cancer twice first time was colon,and have been in remission for 9 years,at 39,I was dx with ovarian ca,I just finished my last chemo therapy treatment today,6 of carbo/taxatere and have been treated very aggresive for ca on a micro level cea125 are in the 4's,Iam not really sure at this point in time if Iam going to due maintenance chemo,Ihave mixed feelings on it all because their is no guarante,I was informed today, that the year of taxole/taxatere will give 7 months extra before any recurrence could occur,in my opion I just might ride out the storm and have a quality of life and be monitored very closely with the blood tests and scans,that is how they were able to detect this ca,due to the constant follow care from the coln ca.If anyone has any opion on this I would love to hear it, thankyou very much!Stay positive,never give up the fight no matter how bad this stuff gets you down,because it does at times.You are all very SPECIAL PEOPLE AND NEVER FORGET!!!

[plady]

I hate to bother you again, but I was wonder where you purchased the Reishi Mushroom supplement and what the cost was.
I e-mailed one company to get the cost and I haven't had a reply.

Thank you for your time


plady

[plady]

i really appreciate the information you gave me.  I was looking at the SunRecome brand online, but I would rather get what your wife was successful with.  You have been such a help to me as my time is limited right now because of our type of business, which is seasonal, so I have very little time right now to research and look for information.  You have been very kind with your help.  My prayers are with you and your wife.  It looks like she is as lucky as I am with such a husband. I have also been blessed in that respect and it sure does help in this situation.  Again thanks.  I'm  sure I will be posting to you again, as you sound very knowledgeable.  There are so many things out there, I have become very overwhelmed trying to figure out whether they are a scam or not.  I have developed my supplement regimen, trying to help my situation everyway I can.

thanks again,

plady

[Jatoo]

It's okay. We bought it in Los Angeles area. Their phone number is 626 356 3625 ask for Rita Wu(US Green Valley Int'l). You can call New York at 718 352 8519 ( if 800 878 8315 don't work) if it is closer to you. It's rather expensive ($150 a box in tea form and a bottle of capsules later). We were rather desperate to find a cure but they sent a scientist from China there and we sat and listen prior to purchasing. I bought $8 a bottle(capsules)of Reishi not SunRecome brand online but I won't even recommend that my wife use it since it may not work. I maybe able to get SunRecome cheaper for less than half the price but I have not arrange it yet. So there you are, I don't want to advertise this product here in this forum but somehow if it worked for my wife why not let other patients benefit if they want it. Remember I told you to do your own research and make your own decision? I hope it will work for you too.

[plady]

Thank you so much for your long post and information you gave to me.  It was so helpful.  I have found a place that sells this herb.  The only way to contact them was by e-mail and I have done so.  I would like to hear the story when you have the time someday about how you came about this information.  Best of luck to you and your wife.  My doctor will decide which route I will take after my ct scan this morning.  Once again, thank you so much and my prayers are with you.

[Jatoo]

Dear Plady:

It's a pleasure and our goal to help everyone to fight this disease. Thank you for the info on Avemar. It sounds very interesting that there is another product that can help the immune fight cancer. However in my initial read it specifies that one has to be under the guidance and supervision of a physician when taking this product unlike SunRecome. And also, so far there is no data yet that specifies that they were able to shrink tumors. But still, it is a good blessing and I am glad that they are conducting all these research. I will continue to watch this product because of its benefits.

Please keep in touch and I hope you all the best in your CT scan. Thank you.

Jatoo

[plady]

I know what I forgot to ask you in my previous post. It sounds like you have done a lot of reasearch.  I was wondering if you had ever heard of Avemar.  I have been reading a lot about it and was wonder if you had any thoughts on this.  It is a wheat germ extract.

Thanks again

plady

[Jatoo]

I will keep in touch. Thanks for that book on "A Feather in my Wig". I now remember what BAGUBA means when I went to the Archives and I remember that book. I will go to Barnes and Noble to take a look at it. It is true that right now we are our own advocates. The research on Ovarian Cancer is rather slow and I think not much funding, relatively compared to Breast Cancer. Look University of Michigan already studied in the Lab that Ginger kills ovarian cancer (see Goggles- April 2006) the next thing they just have to do is test it on mice, but how long shall we wait to see the results that it works in animals as well and not just in a Petri dish? So we have to do our own research and make our own decisions as to the right cure. That's why Oncologists tell us to enroll in Clinical trials. But again, there is always hope. We just have to find the means. Somebody said God helps those who help themselves. Thank you.

[baguba]

It is so important to be our own advocates.  And yes, prayer does work!I have just completed reading "A Feather in My Wig", the story of Barbara R. Van Billiard from Massachusetts - a 17 tear OVCA survivor, and her journey with this horrid disease.  It is inspirational, and does lift the spirits.  Maybe this might be a good read for your wife, if she is up to it.  After reading it you cannot help but feel that we all have a shot at licking this monster. Please keep me posted as to what route your wife is taking and how she is progressing ~ I send continued prayers and God's blessings your way.

[plady]

Could you please let me know what the herb you mentioned in your post that is FDA approved in China.  I was very interested in your explanation of the recurrence of microscopic cells.  That is what I am experiencing at this time.  Thank you

[Jatoo]

Dear Plady:

I am sorry on what happened to you. I will pray for you and please do also for my wife. I know how it feels as I relate to my wife's when she had a recurrence for only after 3 short months. Your case is almost similar to hers, that is, in being diagnosed last year in June. As you can see her story above, she had ascites surrounding the liver and a 3x3CM tumor and it was hard for her to move. It was a very scary moment for us.

I have been reading your post including the one with Doctor Goodman and actually I wanted to answer you earlier re CA elevation and ask you a question as to whether you are post menauposal? If you are, then you and my wife are almost similar. You both are platinum-resistant. The only thing different is the route you both took. Why give platinum again when it did not work in less than 6 months? That's why we went to Doxil which is FDA approve. But I know it's very hard to decide once you are in that situation. Even some Oncologists are not sure as to what to do (First hand knowledge from their rx). So I made a lot of studies and research on anything related to Ovarian Cancer. Anything and I could argue with Oncologists. Why not this, why not that? Even to my wife who is also a doctor.

I don't want to do any marketing on that herb which is rather expensive. I think it is because of the work their scientists have undertook to make the drug effective. And the way they culture that herb. After all taxol comes from a pacific herb. So study for yourself and make your own conclusions. Remember Dr Goodman said somewhere that there is no right or wrong answers here since there has been no studies made (correct me if I am wrong). The latin name is Ganoderma Lucidum which is actually Reishi but don't just buy any reishi that would be easy. Look instead for the SunRecome brand and read that it is FDA approve in China. So make your research. Go to Goggles and and type SunRecome Ganoderma Lucidum. Since this post is getting longer I will tell you in another post as to how we stumbled on this drug from a Chinese cancer patient who is now using it for maintenance. All the best and again I pray that they get the right cure.

Jatoo

[Jatoo]

Thanks for your reply and your prayers. She had complete surgery last June 30, 2005 for stage IIIC (It went to the lymph nodes.) Had 6 rounds of Taxol/Carbo finished in Nov/05. Was only in remission for 3 months. Ca 125 shoot up from 8 to 300 within those 3 months (Was 1000 before surgery). Ascites were around her liver and a 3x3 CM mass in the abdomen. We enrolled in Telcyta clinical study but was randomly chosen for Doxil which was rather fortunate (prayers does work). Doxil removed the ascites on only the first treatment and CA 125 down to 37. By the 2nd treatment the mass shrunk to 1/3 (CA125 to 12) and was gone by the fourth. Now her CA 125 is 9. Last CT scan showed no mass. But we have a secret that may have helped shrunk the tumor, we were using an herb which was studied to shrink tumor and was approved by the FDA in China. Our Onc did not know. Her dosage of chemo was reduced to almost half by the fourth treatment because it affected her WBC by the 3rd week. So judge for yourself as to why the chemo was working despite a very low dosage.

There is hardly any study of maitenance chemo. So we are breaking new grounds Baguba. Acc to the Dr from MGH Boston there is no wrong or right answer here. We are doing our own clinical trial so we better band together and exchange experiences. This is whats great about this forum. Our goal is to prevent recurrence: to find a final cure or line of treatment for Ovarian Cancer.  We somehow "know" that after 6-cycle chemo the tumor cells become dormant or microscopic and will be feed again by proteins of CA 125 ( the goals of the studies of Mullerian Inhibiting substance of MD Anderson Texas and OvaREx MAB like PACMAN) and will live again to recur just like Dracula (sorry for the pun). Our goal is to completely annihilate him. In this we have hope.

I pray that you will be completely cured by your quest and we will pray together. Keep in touch and again many thanks.

[AnotherKatie]

Sorry I am a bit confused by your secret herb part, why would you not tell your doctor?  Doesn't this destroy the study and perhaps mess it up for other women?
Please could you explain????

[Jatoo]

Dear Katie:

In a way we are no longer with the study since Doxil is a standard drug approved by FDA. Several clinical trials have been made on Doxil before it was approved by the FDA. So doctors already have an idea how it will perform. I however disclosed it to the person handling the clinical trial that her result  may have been helped by an herb we were using. The herb specifies on their studies that it helps chemo work better.

We did not tell our onc because normally they will discourage you from using other drugs which are not standard theraphy which we understand. But that does not stop us from using drugs to facilitate chemo. That's why people are using all sorts of vitamins, green teas, maitake, brazilian herb, you name it desperate to aid their chemo; improve immunity. etc. Nobody knows whether they will really help or not. No studies made. All gut feel. The goal is still to find a cure, help prevent recurrence. That's why we have this forum so we can exchange ideas as to what works that normally we cannot get from our hospitals. I hope I am able to clarify your query. If not I am sorry. I am just trying to relate to Baguba's question about my wife's story. Nothing else. As I told Plady, she has to make her own research, be informed and make an intelligent assessment as to what to do. Thanks.

Jatoo

[baguba]

Although I have not begun yet,(I have two more treatments of a 6 round taxol/carbo regime and then my oncologist has suggested a year's maintemamce for me), I am planning to do the maintenance that was recommended for me. I was diagnosed in 2002, with a recurrence this past May.  Taking this maintenance would depend on the body's ability to handle it without any problems with neuropathy. I understand there is much controversy in the oncological field re: this, as many reports support initial diagnosis followed by maintenance therapy with good results, but that there is not much evidence either way to support maint. with recurrent disease.  What stage was your wife originally diagnosed at and how long has she been in remission before this recurrence? I am sure you are in good hands and that your wife's onc. would not suggest anything that would not be of some benefit to her.  God Bless,and you will be in my prayers.