Sharing and looking for suggestion

zenisthou

Dear ladies,

It has been a long time since I last visited here. I will need time to read through so many threads that I missed. I have updated my "about me" page. I cut and paste it here just to share with you about my case. I also appreciate any suggestion/advice from you because I am actually pretty frustrated and lost at this moment.

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After first surgery on 12/29/2009, I had 8 cycles of Carbo/Toxel. CA125 drop from 880 to 40 within the first 4 treatments, but bounce back and forth between 40 and 30 in the following 4 treatments. My doctor doesn't like the fact that the CA125 did not go down to one digit, he put me on Toxel maintainance once a month. I had 7 of the maintainance treatments, and my father passed away (at age 91) in Taiwan. I went back to Taiwan for funeral in Feb, 2011. I had last toxel maintainance on 1/18/2011. I didn't take any treatment while I was in Taiwan. I came back to USA on 3/20. Had a blood work on 4/1, the CA125 was up to 77, and then on 4/15, it went up to 135. PET scan shows finding and confirmed the recurrence.

Update 11/15/2011: After multiple 2nd opinions and research, I decided to go with HIPEC to treat the recurrence. The surgery was scheduled on 7/22 because I want to go to the Alaska Cruise with my kids. My oncologist pressed hard for having chemo before surgery because he concern it will be spread out of pelvic so that I won't be qualify for this surgery anymore.(HIPEC is a clinical trial for ovarian cancer.) I decided to take my own risk not to take chemo before surgery but monitor CA125 every month. The CA125 reached 175 at the end of Arpil, and then down to 124 in May, and then 110 in June, and right before the surgery, it was 90.

So I had the surgery on 7/22 as scheduled. The surgery only went for 6 hours instead of original planed for 12 hours. They only found a small area with visible cancer (as shown on PET scan in April). They barely had enough sample to share between two chemo sensitivity labs I ordered (Rational and Clarity) and the pathology department of the hospital. I only stayed in hospital for 5 days instead of original plan for 12 days. I recovered very well physically. I went back to my hiking routine 4 weeks later.

But, BUT, the CA125 was at 170 four weeks after the surgery(August), and then up to 216 in September, and then doubled to 420 in end of October.

My doctors can't explain why the CA125 went down while I didn't do any chemo, and creeping up after the heated chemo treatment. But they just want me to do more chemo.

Both labs report came back and showing that my cancer cell resist to most of the chemo, and sensitive to some combination not standard to treat ovarian cancer. My oncologist told me that he won't even use those lab reports for reference because the chemo sensitivity test is not approved as a standard guidline for cancer treatment. So, he wants me to do topotican although both reports shows the cancer cell is resistant to topotican.

I am very healthy physically as of now. I go hiking everyday, eat well, sleep well, enjoy everyday. I don't see reason why I should use my precious day to test through all the chemo on my oncologist's list. As of now, I am still debating if I should go on chemo or not.

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I wish the best to all of you.

Tracy

LaundryQueen

Good to hear from you
Tracy: if I were in your shoes, I would try to find someone to use the drugs that your malignant cells are not resistant to.

Can you find a doctor in your area who does IPT chemo? It is expensive & not covered by insurance. However, that doctor is more likely to use your chemosensitivity test when choosing chemo for you.

I don't know much about reversing chemoresistance but have read that a combination of Verapamil (a calcium-channel blocker) & Ketoconozole (an anti-fungal agent) have been used to reverse taxol resistance. Maybe you can find an integrative doctor who understands how to help you.

I feel that you will figure this out soon & that your case may be more stable than your CA-125 appears to be. You are an amazing "researcher" for a lay person--there are so many options still open for you. Have you read about bindweed? (bindweed might make the CA-125 go up while the cancer is dying off).

Would your doctor consider using gemcitabine/ carbo?

Please keep us posted.

Hissy_Fitz

Tracy....I was diagnosed
Tracy....I was diagnosed about the same time as you (Sept, 2009) and also did the standard Carbo/Taxol, then a year of Taxol maintenance. I haven't had any tests run to determine what chemo my cancer cells should/should not respond to, but it certainly makes sense to go for whatever what "should" work. But if there is not known treatment that your tumors show sensitivity to, then I would look for a second opinion and maybe a clinical trial.

The IP chemo sounds like a great idea, except I don't know any physicians who will do it for a recurrence.

Are you near one of the big cancer centers?

Carlene

zenisthou

LaundryQueen said:

Good to hear from you
Tracy: if I were in your shoes, I would try to find someone to use the drugs that your malignant cells are not resistant to.

Can you find a doctor in your area who does IPT chemo? It is expensive & not covered by insurance. However, that doctor is more likely to use your chemosensitivity test when choosing chemo for you.

I don't know much about reversing chemoresistance but have read that a combination of Verapamil (a calcium-channel blocker) & Ketoconozole (an anti-fungal agent) have been used to reverse taxol resistance. Maybe you can find an integrative doctor who understands how to help you.

I feel that you will figure this out soon & that your case may be more stable than your CA-125 appears to be. You are an amazing "researcher" for a lay person--there are so many options still open for you. Have you read about bindweed? (bindweed might make the CA-125 go up while the cancer is dying off).

Would your doctor consider using gemcitabine/ carbo?

Please keep us posted.

Thank you, LQ
I've been always want to send you a message and send my greeting. I am confident that you will deal with your situation with your knowledge. You are an amazing researcher in my opinion. I am limited in reading many medical terms due to the fact that English is my second language. I am just trying my best.

Can you tell me more about IPT chemo? what would be the key word for me to find a doctor to do that? I did read something about the calcium-channel blocker and "treat cancer as of fongus". I just have to find someone who have real experience with the approach. Bindweed is new to me. I will need to study more.

My oncologist agreed to use gemzar/carbo when I insist not to use topotecan. Gemzar/Carbo is "intermedium" on my chemo resistance essay, but all sensistive drugs are not in the Ovarian Cancer treatment guidline.

Thank you again for your input. I will keep everyone posted. Please take good care, and wish you the best!

Tracy

zenisthou

Hissy_Fitz said:

Tracy....I was diagnosed
Tracy....I was diagnosed about the same time as you (Sept, 2009) and also did the standard Carbo/Taxol, then a year of Taxol maintenance. I haven't had any tests run to determine what chemo my cancer cells should/should not respond to, but it certainly makes sense to go for whatever what "should" work. But if there is not known treatment that your tumors show sensitivity to, then I would look for a second opinion and maybe a clinical trial.

The IP chemo sounds like a great idea, except I don't know any physicians who will do it for a recurrence.

Are you near one of the big cancer centers?

Carlene

Thank you, Carlene
Dear Carlene,

I always adore your energy and ethusiasm on this board. Thanks for your advice. I am in San Jose, California. I am willing to travel to anywhere to get a proper treatment. Do you have a good suggestion?

After the first surgery, I asked my oncologist the possibility to do IV + IP treatment. He told me the IP is out of date. I read an article stating that IV + IP does increase the over all surviving. I know another lady who did IP treatment with stage IV OC, and is doing well after 4 years so far. You are right, I should pursue the IP chemo again. I will talk to my oncologist(new one) about it.

I am researching for clinical trial as well. Because I don't have symptoms and I didn't start any second line treatment so far, I am not sure if I will be qualified. If you heard any promising clinical trial, please share with me.

Thank you so much. Please take care and wish you the best.

Tracy

LaundryQueen

zenisthou said:

Thank you, Carlene
Dear Carlene,

I always adore your energy and ethusiasm on this board. Thanks for your advice. I am in San Jose, California. I am willing to travel to anywhere to get a proper treatment. Do you have a good suggestion?

After the first surgery, I asked my oncologist the possibility to do IV + IP treatment. He told me the IP is out of date. I read an article stating that IV + IP does increase the over all surviving. I know another lady who did IP treatment with stage IV OC, and is doing well after 4 years so far. You are right, I should pursue the IP chemo again. I will talk to my oncologist(new one) about it.

I am researching for clinical trial as well. Because I don't have symptoms and I didn't start any second line treatment so far, I am not sure if I will be qualified. If you heard any promising clinical trial, please share with me.

Thank you so much. Please take care and wish you the best.

Tracy

IPT Chemo
Tracy: the website for insulin potentiated therapy (IPT) chemo is www.iptq.com

There are three clinics in California that do IPT chemo but I don't know if you are near Upland, Oceanside or Santa Rosa.

I had IPT chemo with carboplatin alone when I was in Mexico. It was really easy to tolerate. Some of the cancer nodules went away, some decreased considerably but others remained. My CA-125 continued to rise so I had to something more.

So now I found a local doctor who is doing IPT chemo for me with carbo/Gemzar. I can only imagine how the full strength Gemzar might be & I have a lot of sympathy for anyone on Gemzar. It must really wipe out your energy! So far, the treatment is still tolerable but I just had a couple of treatments.

I don't expect the IPT chemo to cure me--I'm trying to preserve my bone marrow and maybe even get the cancer out of my liver for now. And I am trying to stay alive until a better therapy is approved & covered by insurance.

You probably have a better immune system than me because your CA-125 was dropping BEFORE surgery. I would be elated if that were me.

I was told that IP chemo most effective immediately after surgery & not so much after a recurrence.

Sunnyjh

Frustrating
I had a similar situation when I was diagnosed dec2008 with ovarian 3c they sent off tumor .and the treatment recommended was not done, they went with the carbo, taxol standard treatment. Stayed in remission one year. Second time around carb, taxol, and avastin I have been on just avastin since jan2011. My first surgery was done by a great oncologist surgeon. I am on gog 213 trial. When my next occurence comes I am thinking of asking for the chemo that showed effective during the testing, instead of what's protocol.my ca125 has been held in check so far16.4 my cat scan this week indicated a 1 cm possibly at the vaginal cuff. Exam could not confirm, so wait and watch. judy

Tethys41

Block Center
Tracy,
You may want to look into the Block Center http://www.blockmd.com/
They do treatments specific to you as an individual. I know of a woman there receiving treatmetn right now, who has three different cancers. Her regular oncologist said they couldn't treat her because the chemos that would help one or another of her cancers would aggravate the others. The Block Center is using a personalized protocol on her, using three different chemo drugs given at separate times, and the system is working for her.
My only concern with IPT chemo is that I have heard it is less effective if you have gone through a lot of treatment prior to using it.
Best of luck to you,
Kate

carolenk

Tethys41 said:

Block Center
Tracy,
You may want to look into the Block Center http://www.blockmd.com/
They do treatments specific to you as an individual. I know of a woman there receiving treatmetn right now, who has three different cancers. Her regular oncologist said they couldn't treat her because the chemos that would help one or another of her cancers would aggravate the others. The Block Center is using a personalized protocol on her, using three different chemo drugs given at separate times, and the system is working for her.
My only concern with IPT chemo is that I have heard it is less effective if you have gone through a lot of treatment prior to using it.
Best of luck to you,
Kate

Chemo resistance
I would expect that chemo resistance is the reason why IPT would not be effective after having many chemo treatments prior to using IPT. Then again, that could be said about chemotherapy in general. Ovarian cancer seems to be so deadly because it is not a uniform disease--some cancer cells are platinum sensitive while others become platinum resistant and so on until eventually, all the malignant cells learn how to become chemo resistant and the person is out of options.

I would like to see more research on how to reverse chemo resistance. It seems like sometimes a person will lose the chemo resistance on their own if enough time has passed since a particular chemo has been used.

zenisthou

CA 125 double from October number
Visited my oncologist today. CA125 double again from 416 (Oct 24) to 991 (November 21). I don't have symptom. Still eat well, sleep well, very active. I asked doctor to order PET scan. I thought of this is the christmas time, I sure hope my PET scan image will not light up like a christmas tree... lol... (may be I really shouldn't joke about this.... sigh!)

Treat symptom, not to treat the number, still my believe. We'll see...

Tracy

zarkapopovic

zenisthou said:

CA 125 double from October number
Visited my oncologist today. CA125 double again from 416 (Oct 24) to 991 (November 21). I don't have symptom. Still eat well, sleep well, very active. I asked doctor to order PET scan. I thought of this is the christmas time, I sure hope my PET scan image will not light up like a christmas tree... lol... (may be I really shouldn't joke about this.... sigh!)

Treat symptom, not to treat the number, still my believe. We'll see...

Tracy

Another Doctor
I think you should find a doctor that will try the drugs that your cancer was sensitive to. You had the assays done for a reason.

Have you gone to talk to anyone at UCSF? Or Stanford?

Best wishes,

Zarka