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phase 1 and 2 clinical trial patients

SHANNON1231's picture
SHANNON1231
Posts: 56
Joined: Nov 2012

Hi, my name is Shannon. I have stage 4 ovc, and just started a clinical trial. It includes recieving a lower dose of taxol once a month for a year to prolong a reocurrance. I was wondering if anyone else has tried a similar trial, and how they are doing?

ptharp
Posts: 190
Joined: Oct 2012

Have not heard of that one.

tealnpink
Posts: 6
Joined: Oct 2010

I am starting a phase 1 trial but not with taxol. I think once a month to prolong a reoccurrence is a good idea if one is platinum sensitive. I am platinum resistive therefore a platinum based drug does nothing for me.

SHANNON1231's picture
SHANNON1231
Posts: 56
Joined: Nov 2012

Thank you for your response, I'm not sure yet if it is working. My ca125 went down to an 8 after my original 6 doses. But now up to 14 after 3 treatments from the trial. Guess we'll see. Best of luck with your trial!

MJensen
Posts: 93
Joined: Oct 2012

Hi Shannon,
Did you start this monthly Taxol right after finishing your first round of treatments. Are you considered to be in remission now? I see my Dr tomorrow and he is talking about going back on Taxol. I had it with Carboplatin during my first round of treatment. My marker was at 9. But it climbed pretty quickly after I was done so we started on gemstar, then Doxil, Avastin and currently Topotecan. My marker is around 1800'so that is why he is thinking weekly Taxol but lower dose. I remember it giving me neuropathy, hair lose etc.. I had a lot of side effets. How are you doing on the lower dose? How is your quality of life? Thanks for any help,you can provide. I wish you the best!!!! Michele

SHANNON1231's picture
SHANNON1231
Posts: 56
Joined: Nov 2012

Hi Michele, yes I started the trial 2 months after finishing my original 6 doses of chemo. I don't think I was considered in remission cause I was not off of treatment for very long, but I did have to show no signs of disease in order to participate in the trial and my ca125 was 8 and my ct scan was clear. The lower dose still comes with some side effects. Some neuropathy and queeziness after a treatment, but only lasts a few days. My hair starts to fall out about 2 weeks after a treatment, but then stops. So I have had 3 so far, and still have hair. My quality of life is good. I have some ruff days, but then I feel normal again for 2-3 weeks. So I think its worth it. If you don't mind me asking, how long did you go after treatment before your ca125 went up again, and what stage are you? Did you have a complete hysterectomy also?

MJensen
Posts: 93
Joined: Oct 2012

Hi Shannon,

I was diagnosed Aug 2010 with stage 4 ovc and went through 6 treatment of Taxol / Carboplatin. I did 3 treatments and then a full debulking surgery. Complete hysterectomy. I went right back on the T/C cocktail and had my last treatment Dec 9th. CT scan was clear at the time and we thought I was in remission. I have what is called "frosting or seeding" which is difficult (impossible) to see on a scan. In Dec my marker was 9 and by Feb it had climbed to 103 so I had to start chemo again but the DR wanted to hold off for awhile to let my bone marrow recover a bit. But basically I have been on chemo ever since. I was going to start Taxol yesterday and get a low dose weekly.....but my marker went down a bit (1400's) so we stayed with the Topotecan to see if it is working. I still have bad neuropathy from the first time on the platinum cocktail..just started taking Gaberpentin (?) to see if it will help. So many people on this board says it does. Dr said it won't repair the nerves but can manage some of the intensity so I said let's try. Well it sounds like they are being very proactive with you and that is good. This cancer can raise it's ugly head at any time so if you have a good quality of life on it I think that is a good thing! Please let me know how things go for you. How often will they check your marker etc. Hope this gives you a very long lifetime of remission!!!!! Good health and happiness to you!!!

SHANNON1231's picture
SHANNON1231
Posts: 56
Joined: Nov 2012

Hi Michele, sorry you have been on chemo for so long. I too am stage 4, and at the time of my surgery my oncologist said the cancer looked peppered around my organs. He said he couldn't get to the diaghram area though, and I later had to have a lymphnode removed under my right armpit that tested positive for the cancer. They check my ca125 once a month for the trial, a few days before each treatment. I was at an 8 before the trial, and it has gone up 3 points each time and was at 14 my last bloodwork. My dr just calls it noise for now, so we'll see. I'm thinking about asking him his opinion on this whole Metformin thing? Seems to be the latest thing that may be helpful for us. I really hope the gabapentin helps you, and you number keeps going down. Do they plan on doing another ct scan soon? The last one was last December right?

MJensen
Posts: 93
Joined: Oct 2012

Hi Shannon,

I actually have CT scans pretty regularly. The problem is since I have "seeding / frosting" not a lot shows up on the scan. Last scan was Sept. The radiologist thought I had diverticulitis but we know that isn't the case. I don't have a measurable tumor to monitor so we rely on my CA 125 marker to see how I am doing. I asked my DR about Metformin this week. He said we can try it any time I am ready. I have been dealing with some intestinal issues so I am trying to get those under control first. The side effects from Metformin are mostly intestinal so I didn't want to try it until my intestinal problems were better. I want to give it a try since it sounds promising. Let me know if you start it and if you experience any side effect if you wouldn't mind. My CA125 fluctuates as well and small amounts usually are in the noise so I wouldn't worry too much unless they keep going up or double. You are still in normal range which is great! I hope you have great success on this treatment! Please keep us updated!

MJensen
Posts: 93
Joined: Oct 2012

Hi Shannon,

I actually have CT scans pretty regularly. The problem is since I have "seeding / frosting" not a lot shows up on the scan. Last scan was Sept. The radiologist thought I had diverticulitis but we know that isn't the case. I don't have a measurable tumor to monitor so we rely on my CA 125 marker to see how I am doing. I asked my DR about Metformin this week. He said we can try it any time I am ready. I have been dealing with some intestinal issues so I am trying to get those under control first. The side effects from Metformin are mostly intestinal so I didn't want to try it until my intestinal problems were better. I want to give it a try since it sounds promising. Let me know if you start it and if you experience any side effect if you wouldn't mind. My CA125 fluctuates as well and small amounts usually are in the noise so I wouldn't worry too much unless they keep going up or double. You are still in normal range which is great! I hope you have great success on this treatment! Please keep us updated!

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