New to this message board

Greetings everyone, I'm new to this message board. My wife was diagnosed with metastasized ovarian cancer (adenocarcinoma of the right pneumothorax) late last summer. They did a talc pleruodesis and her biopsy confirmed the metastatic cancer.  She had nearly 7 months of chemotherapy including 3 cisplatin/taxol drips (didn't work and almost ruined her kidneys); then Gemzar/taxol for another 3 IVs; also didn't work.  Her CA125 levels bounced around, but never went sufficiently low and stayed there.  Then her oncologist put her back on cisplatin/taxol and was going to watch her kidneys.  It didn't help and wracked her kidneys again. (you really have to wonder sometimes.)

 My wife originally contracted ovarian cancer in 1995 and the same protocol (cisplatin/taxol) worked after 6 treatments.  She was cancer free for 12 years until last summer.

We had a consultation at Johns Hopkins and they feel the cancer is platinum resistant, and so there we are.  She's now off chemo and simply resting and healing since the cure (at this stage) is far worse than the disease.  Seems as if we're still in the stone age when it comes to cancer cures, or even chronic management of the disease.  All those billions of dollars and it doesn't appear as if we've come very far.  Although, to be fair, 12 years of being cancer-free was a real bounty.

Anyway, I'm just interested in hearing from anyone who has a family member who has gone through a similar diagnosis and treatment.  I'm interested in learning about outcomes, and/or alternative therapies - if there are any that transcends anecdotes.

 Thanks everyone. -Andrew

Welcome Andrew, so sorry to meet this way. First let me say congrats!!! to your wife on being a 12 year survivor.You will definitely find this a place to share your ups and downs, ask questions and help others. These are amazing woman here full of encouragement, enthusiam, compassion and support.I was dx 2/08 with 3c and am still in treatment but the tumors are held at bay. I  do take supplements.and eat only organic if I can. I bought a juicer and juice all my own veggies. I agree their should have been a cure by now but then what would happen to all the drug companies.

We have to enjoy each day as if it were are last and just live in the moment.

I'm sure someone will give you more advice.

Hugs, Terry

While this is certainly a trying time for your wife and you, it is good to hear that she initially had a 12 year remission. Can I ask what stage she was initially diagnosed at ?  I as diagnosed at stage IIIc ( with lymph node involvement ) in October 2007 and finished treatment in April 2008. Thankfully, I've stayed in remission so far with a ca-125 of 6. I do agree with you 100% in that we have not come very far in our efforts to "cure" cancer. Chemo and radiation have their place when it come to treating cancer, but they certainly are not the answer. I have been trying to harness the power of my own body to stay in remission. I eat a mostly plant based diet ( organic when possible ) and I avoid sugar, processed food, and white flour. I try to eat a lot of garlic, shiitake mushrooms, spinach, and broccoli. I drink carrot juice, green tea, and cranberry juice everyday. I also take Immpower, a multi vit, vit c, vit e, vit b complex, Maitake Mushroom supplement, Milk Thistle, magnesium, calcium, and shark cartilage. I drink Essiac tea and I have a spoonful of Udo's oil with cottage chees in the morning. I eat this way ( and it is not difficult to do )because I have spoken to some long term survivors of various cancers who either healed their cancer altogether using some of these same approaches, or they have used them to stay in remission. I had intitially thought that what the medical doctors offer is our only hope when it comes to cancer, however a real turning point for me was when I met a local breast cancer survivor who went from terminal to cancer-free going vegetarian. She was stage IV with metastatsis to her spine, and she totally overhauled her diet and began exercising and taking supplements. Her cancer disappeared and she has been cancer free for 4 1/2 years. That really sparked my interest in nutrition and other therapies that spur the body to heal itself. I am also a strong believer in the power of prayer and positive thinking. There is always hope !   I will keep your wife in my prayers and hoep that things turn around for her. As another woman, I just want to say thanks for being so supportive of her. It is nice to see a husband post on here.

Hello Andrew,

I'm so sorry to hear of your wife's returning cancer, but consider her lucky to have gone this long without an occurrence.  I hope you will find this message board helpful as many other women are going through similar situations - searching for a chemo that will work for them.  I am fortunate to have found chemos that I can tolerate (DX 3 years ago - on maintenance gemzar/carbo for 10 mo.)

I know it is time comsuming, but if you will go to page 3 and click on the subject "chemotherapy" (over 500 messages there), you will find so much information that might be useful.  There are many different chemos and these are discussed - pros and cons.  Perhaps when you wife heals, the Drs. will try some of the other chemos that are out there.

Please keep us posted as to her progress and keep the faith.  Know that she and you are not alone and there are many of us out there struggling to fine the right path to a cure or just staying alive.

Give her a hug and Mother's Day wishes.

Gayle

My wife, Jackie, was originally staged in 1995 as IIIc, but the tumors were well-defined (and large - 3 pounds each).  She thought she was pregnant. After surgery and debulking they only found a small 1cm metastasized area which was treated with the cisplatin/taxol.  Also, she was part of an NIH Phase II trial comparing cisplatin/taxol with carboplatin taxol and whether in-patient versus outpatient infusions showed any difference in efficacy.  She was in-patient (48 hour infusion) and it obviously worked (for 12 years at least). Twelve years later, this recurrent phase is refractory (platinum resistant).

 I just want to thank you all for responding so soon and in such positive ways. I just wish I could get Jackie onto this mesage board, but she's still recovering her energy after the chemo and near kidney failure.  I doubt chemo will be in her future. So, for us, at least, it's either another type of vector (vaccine or monoclonal) and/or nutrition to build-up her immune system: For sure the latter.

As far as being a supportive husband, well...it's difficult for some guys; obviously not for me.  I can't even imagine where I would be as a human if it weren't for Jackie.  It never occurred to me not to do all I could to help and support her.  Two wings of a bird....right?  Thanks everyone!  Cheers.

 

Hi Andrew, I also wanted to tell you I  also take take these supplements as well.

Fish Oil      1000mg

Vitamin C  1000mg

Calcium & Magnesium plus D

Milk Thistle  250mg

Organic Multi Vitamin

CoQ10       100mg

Curcumin w/ Bioperine   1000mg

Vitamin E    200mg

Selenium      200mg

Ahcc Mushroom Powder

Probiotic

 

On 5/7/2009 Andrewbl wrote:

My wife, Jackie, was originally staged in 1995 as IIIc, but the tumors were well-defined (and large - 3 pounds each).  She thought she was pregnant. After surgery and debulking they only found a small 1cm metastasized area which was treated with the cisplatin/taxol.  Also, she was part of an NIH Phase II trial comparing cisplatin/taxol with carboplatin taxol and whether in-patient versus outpatient infusions showed any difference in efficacy.  She was in-patient (48 hour infusion) and it obviously worked (for 12 years at least). Twelve years later, this recurrent phase is refractory (platinum resistant).

 I just want to thank you all for responding so soon and in such positive ways. I just wish I could get Jackie onto this mesage board, but she's still recovering her energy after the chemo and near kidney failure.  I doubt chemo will be in her future. So, for us, at least, it's either another type of vector (vaccine or monoclonal) and/or nutrition to build-up her immune system: For sure the latter.

As far as being a supportive husband, well...it's difficult for some guys; obviously not for me.  I can't even imagine where I would be as a human if it weren't for Jackie.  It never occurred to me not to do all I could to help and support her.  Two wings of a bird....right?  Thanks everyone!  Cheers.

 

Andrew,

Hi I am Nancy and I am an ovarian cancer patient too. Stage 3c dx july 07 had surgery dubulking and started chemo in Sept 07, cisplatin and taxol. I had taxol IV first day and then cisplatin IP second day and then eighth day I had taxol again IV.  On eighth day I was so sick could hardley keep my head up right. felt terrible and did not want to eat much. Lost weight too, although I gained it back now. Anyhow during treatment, they kept coming in and taking blood, saying the lab screwed up or they did not get a good amount. This went on about four times. Then I finished treatment and the nurse came in and said we will flush you, for a bit cause the doc need to speak with you.

He came in and told me my creatin was 3.8 and was I drinking enough and I thought I had. He wanted to admit me to hospital in NYC ( where we were, Sloan Kettering) to be flushed more. My father asked him whether it was life threathing and whether it could be done tomorrow at a local hospital where I live, LI NY. He said it could. He wrote orders for what had to be done, so hospital here would know.

I went the next day and was hydrated but when hydrated my creatin went to 4.1 and I was admitted to hospital and it was a 12 day stay. ER doc first was questioning why I was there, he did not believe I was dehydrated, and when my blood test came back, taken two hours after IV of fuilds where started, and creatin went up higher than he whisled a different tune.

Turns out I was not dehydrated I had a kidney reaction to the cisplatin. After I recovered from that, Sloan re-thought my treatment and put me on carbonplatin and taxol. I had IV taxol and IP carbonplatin all in one treatment every 21 days. I had 7 treatments of that.I ended that chemo at the end of Jan 08.  My kidneys are fine now.

I am now on gemzar IV and carbonplatin IV again for a reoccurence. I had doxil for 4 treatments and 125 just climbed. I just got word my 125 went from 517 down to 271 with three treatments, 2 gemzars and one combo of gemzar and carboplatin. My creatin is being checked with this just to be safe.

 I am sorry to read about your wife, just thought I would let you know I had kidney problems with cisplatin and they now say I am allergic to it. But not to carbonplatin.

I wish you and your wife many blessings and hope they find a treatment for her soon.

Blessing Always Nancy

 

 

Thanks Nancy.  Happy to note that you were able to find a chemo alternative that didn't negatively affect your kidneys further.  Jacke too had Gemzar and Taxol, but her CA numbers weren't dropping with Gemzar. She hasn't tried Carboplatin yet, but is very much afraid to try any further platinum-based drugs. (I don't blame her.)

We're checking at NIH for alternative therapies; one that's 'promising' is monoclonal antibodies.  I'll report on that later if it something turns up.

Ever since the 2nd round of Cis-Platin Jackie's creatinine numbers have stubbornly stayed elevated and she gets plenty of hydration. We're just hoping that no permanent damage occurred.

Interestingly, we heard from a protocol coordinator at NIH that they don't use CA numbers much as an indicator.  They're too unreliable. Great...now what? If we decide to go with an NIH protocol, I'll report back on what our findings are.

Blessings to you as well and wishes for a positive outcome.

~Andrew

 

On 5/11/2009 Andrewbl wrote:

Thanks Nancy.  Happy to note that you were able to find a chemo alternative that didn't negatively affect your kidneys further.  Jacke too had Gemzar and Taxol, but her CA numbers weren't dropping with Gemzar. She hasn't tried Carboplatin yet, but is very much afraid to try any further platinum-based drugs. (I don't blame her.)

We're checking at NIH for alternative therapies; one that's 'promising' is monoclonal antibodies.  I'll report on that later if it something turns up.

Ever since the 2nd round of Cis-Platin Jackie's creatinine numbers have stubbornly stayed elevated and she gets plenty of hydration. We're just hoping that no permanent damage occurred.

Interestingly, we heard from a protocol coordinator at NIH that they don't use CA numbers much as an indicator.  They're too unreliable. Great...now what? If we decide to go with an NIH protocol, I'll report back on what our findings are.

Blessings to you as well and wishes for a positive outcome.

~Andrew

Andrew,

    Just thought I would let you know that carbonplatin is a sister of cisplatin and is much easier on kidneys than cisplatin is. Jackie may want to try it, after her creatin levels drop more, and her kidney's get a chance to recover. Doc's can try a low level dose and increase as she sees how her kidneys react. Thats what they did with me, after my kidney failure.  Also the treatment I am on, is the newest out, gemzar and carbo, Gemzar one week and gemzar second week and both the third week and than a week off. So you only get carbo once in a month time.

You may want to ask about it and see what they say. It cannot hurt.

It takes awhile for creatine levels to go down, it took 12 days for mine to get to 3 and more time at home drinking lots to get it down further. Under 3 is safe, but the low the better.

Don't give up hope, there is something out there that will work,. Keep the faith, and tell Jackie, I am praying for her.

As long as her kidneys are monitered and carbo dose begins a t a low dosage, it should be worth the try. I would do it if it will help keep me alive! Is she seeing a kidney specialist as she should?  I did when in hospital. He talked with my oncologist at Sloan and they discussed my case and we went on from there.

Best of luck and blessings to you and jackie.

Let us know what happens. Nancy

 

Hello Andrew-

I'm so sorry you and your dear wife are going through this stuff. Just wanted to let you know that there is a drug study being done by NEKTAR on PEG Irinotecan especially for recurrent platinum resistant ovarian cancer. I am in the 5th cycle of it and getting good results with very easy side effects. The NEKTAR website should give you details. I am being treated in So. Calif. but the test is ocurring nationally. This drug has previously been used successfully in colon cancer and others that I cannot recall at the moment.

Best to you and Jackie,

Ann