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Is Chemo work for you?What kind of chemo you are on and number of cycle. Your side effects and CA125 numbers. Lets share

zinaida's picture
zinaida
Posts: 220
Joined: Oct 2007

Hello my dear teal sisters! Lets share some informaition about treatments. So fare I am on my third chemo line treatments with my 2C ovarian cancer after second reccurency, February 14 was 4 years of my journey. I hade carbo/taxoter and hertheptin -my initial chemo, March-julay 2007, than carbo/gemzar January-june 2010.Start January 2011 I am on Doxil/Avastin. First chemo line and sergery my CA125 was 197 dawn to 7, Second chemo line CA125 start in 800-hundrets and go dawn to 23. This time CA125 highest was 365 and after one cycle of chemo droped down to 93. I am very pleased. And have a lots of hope for good result. So far I had very bad mouth sores for two weeks. It is all gone now. I have rising blood pressure. by double taking blood medicine and anxiety peel right before infusion my blood pressure go to normal. I have some lite nose bleedihg for 3-4 days after infusion, and then it go to normal. Love , Zina

jloe's picture
jloe
Posts: 175
Joined: Sep 2010

Stage IIIc -8/2006 – 4 ½ years ago

As of Friday, 2/18/11, 40+ treatments. This includes 18 IP and I will not be having any more of those. 6 major surgeries including initial debulking, 2nd look, remove more tumors and the spleen, remove more tumors (twice), remove more tumors and part of the bowel. I have had many combinations of chemo – Carbo, Taxol, Taxotere, Gemzar, Cicplatin, Avastin, oral Cytoxan and now currently on my first cycle of Topotecan, 3 on 1 off). I know I must be forgetting something. 7 CT/PET scans. My first CA125 just before the first chemo was 660 and went down to 16 after my first chemo treatment and has always been under 20 since then.

I was only NED once for a few months after my first surgery, second look and 2 cycles of chemo. I have been in treatment ever since with short breaks between surgeries. I have 2 areas of disease and they are very small and no surgery is needed at this time. There has been no change in the size from 8/10 to 12/21 so my doctor considers me stable and still treatable. My side effects from the Taxatere was the hair loss mostly and sore and stiff. Avastin Cytoxan nothing but the blood pressure that was controlled by meds but not for the entire time and elevated protien in the urine so I only finished 5 cycles. I have no side effects from the the Topotecan. Whew, I’m out of breath and need a glass of wine now! :):) J

kikz's picture
kikz
Posts: 1267
Joined: Jun 2010

After my diagnosis of Stage IIIc ov/ca on 3/16/2010 the surgeon determined I had to have chemo before debulking surgery. He stated that if he operated at that point he would just have to close me up. Scary news! I had three taxol/carboplatin infusions three weeks apart. They were done intravenously. I had debulking surgery on 6/21/2010 and surgeon stated he removed approximately 95% of the cancer. I then had three more rounds of chemo. This time is was taxol intravenously on day one, then cisplatin through a port in my abdoman on day 2, then taxol through the port on day 8. Two weeks later day one started again. I had trouble with these infusions. I ended up in the hospital for eight days during the first round because my white blood count dropped so low. Back to the hospital again for five days after day 2 of round three. My electrolytes went so low I fainted at home. I went to the emergency and by the time I got there I could hardly speak. I thought I was having a stroke but it turned out that my potassium level was low along with all the other electrolytes. I was told by the ER doctor that she was surprised I made it. I didn't ask her what she meant by that but if she didn't mean death what else could she have meant? Anyway my oncologist determined that I could not have the final taxol infusion because my body could not take anymore. She felt I had enough (I hope she is right). The surgeon agreed. He said the chemo I had post surgery was like icing on the cake. I was pronounced NED on 11/03/2010 and have been feeling great except for some chemo brain and a lot of aches and pains which seem to be escalating. I don't like being in pain but at least I know that these joint and/or muscle pains can't kill me. I think of each day as a gift and trying to enjoy life. I trly to stay aware of how precious life is. Normal things that would have bothered me such as I spilled cranberry juice twice within two days on the new carpet in my bedroom. That would have sent me over the edge before but now I think, oh well it will get cleaned. NO BIG DEAL! My best to all of you ladies who are in this battle. I am sorry we had to meet this way but I am proud to be among so many brave and admirable women. Not to mention the terrific sense of humor so many of you have. I find it so helpful to be able to laugh about this. It gives me a sense of power over the beast. It cannot take away my spirit.

Karen

kikz's picture
kikz
Posts: 1267
Joined: Jun 2010

I forgot to mention my CA 125 counts. Initially it was 6000+. The second one before any treatment rose to over 9000. After first chemo it went to 3200 then 800 but right before surgery it rose to 1600. The surgeon could not explain. After surgery it was 13. The next three were 7 and the one I just had in January was 5. That was great news.

Karen

sarahb74
Posts: 81
Joined: Dec 2010

I started second line chemo about 5 weeks ago and had my second cycle last Monday. Like my first line chemo I'm on carbo/taxol. When I was first dx I was stage IV and had 4 cycles carbo/taxol, then debulking surgery, followed by another 3 cycles. My CA125 went from 2500 to 9. I was in remission for a little under a year but by December 2010 I began to develop ascites and by January 2011 my CA125 had risen to 2600 (or possibly 3600? I still seem to have chemobrain and especially have trouble remembering numbers). My first infusion back in January didn't work, my CA125 stayed much the same, so they decided to give me another one because "it sometimes takes time" and because it had worked so well for me before. I hope they're right and they know what they're doing! I won't know for another couple of weeks whether things are working for me this time around, which is a bit scarey. The fluid in my feet and ankles which was there about a week ago has largely disappeared, so I'm taking that as a positive sign. On the other hand my abdomen is still pretty distended which I suppose is a negative! Perhaps I'll just try to switch off until my results come through.

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Zina

I wrote a BIG REPLY for 2 hours and had to keep editing it to keep the story straight (it's a big story) and when I went to post it, it disappeared! Hahaha! :)

I was posting on the discussion board early this morning because I couldn't sleep but now I'm tired. I think maybe I SHOULD write a book...it's a good story. I had to leave out a lot of the funny stuff because the posting was getting ridiculously long.

The bottom line is: I had bad time with taxol/carbo chemo because I had an "overkill" reaction that temporarily poisoned my brain from massive tumor die off (believe it or not, that's when I got really FUNNY). Now I am up to carboplatin (without taxol) chemo #4 and doing great. REALLY great. I took a 7 week break from chemo to heal my brain and am still responding to chemo. I never took a break from using the IV ascorbic acid and I believe that someday, IV ascorbic acid will be included in the standard of care.

Have a great day!

Carolen

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Is massive tumor die off a good thing, or a bad thing?

Nancy Mellen also gets IV infusions of Vit C, and hydrogen peroxide, too (I think). Unfortunately, this is a very expensive treatment, not covered by insurance. Some practitioners recommend 2-3 infusions per week, at a cost of $75 - $100 each. Would you mind sharing the cost of your treatments, and the frequency?

Carlene

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Yes, the ascorbic acid treatments are $75 each and I have been receiving 2-3 IVs/week of a varying dose (25-75 Gm). None of it is covered by insurance.

Here's something interesting: immediately after I finished receiving a 50 gram ascorbic acid IV, I had a blood level drawn for ascorbic acid. The results were BELOW the normal limit! Which means that most of the ascorbic acid was used up very soon after it was administered. That was done during the time that I had a LOT of big, hard tumors ("caking of the omentum" as it was described on the CT scan). The omentum and peritoneum grow back in case anyone is wondering about that.

The massive tumor die off can kill a person if it shuts down the kidneys from electrolyte and blood chemistry imbalance (tumor lysis syndrome). That didn't happen to me--my blood chemistry stayed in the normal range.

The neurologist said that I had a "sensitive brain" but I think I was severely B-vitamin deficient and also suffering from malabsorption from the C. diff infection that I had at the same time that I had the massive tumor die off. My pupils were unequal which can be a sign of thiamine (B1) deficiency, too. So I got that corrected by a whole food B complex.

During the recovery from this, I was so exhausted but couldn't sleep and had to use the anti-psychotic drug Risperdal to pull out of it. A nice side effect of the Risperdal was that I had a good appetite and food tasted WONDERFUL again! Hahahaha! :)

have a great evening,

Carolen

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