I have stage 4 clear cell ovarian which progressed during 9 cycles of Carbo/Taxol ( liver mets & lymph nodes). In a month off chemo, liver mets doubled in size and several new nodes showed up.
Six weeks ago I started a Phase 1 trial at MDAnderson with Doxil, Avastin & Torisel. I am pleased to report that my CT results showed my liver mets had decreased 26%; all lymph nodes decreased in size and no new cancer was found. I believe there are 10 gynecologic patients on the trial and they are having some promising success ( at least right now).
It has been so long since I received some GOOD news at the Oncologist!
Now if I could get a handle on these d*&#$ mouth sores! I did lose 5 pounds this week...which is a dent in the 40 pounds I gained on Carbo/Taxol!
Cheers,
Teri Jakob
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First CT results after starting Phase 1 trial
- By TealOak
- Posted August 10, 2009 at 9:54 pm · 17 replies
- In Clinical trials
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17 replies
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- By momanderson920
- Posted August 10, 2009 at 11:11 pm
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Teri, that is fantastic!!!! And you are only 6 weeks into it....you will be in remission before you know it. I am so so happy for your wonderful news!
- By koh847
- Posted August 11, 2009 at 8:19 am
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Fantastic news! So happy you received good news. Keep us posted on your progress with the study.
:)Kim
- By CountryGirl46
- Posted August 11, 2009 at 8:44 am
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That is great, it is always good to get the good news! I to am in a Phase I trial. I just started last week. It is called Nanotax. So far it has been painful in my abdominal area but I am not having any normal chemo side effects which is wonderful. I hope after six weeks I get some good news like that. I wish you the best of luck with your trial and your recovery.
Lynn
- By cdbart
- Posted August 11, 2009 at 9:35 am
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They (Uof Colorado oncology department)told me do a baking soda, salt combination in a wash several times a day to prevent the sores. 2 parts baking soda to one salt. Mix the dry mix and then add 1/2 teaspoon to warm water a swish after every meal and at bed time.
- By pjoseph
- Posted August 11, 2009 at 9:36 am
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Great news!
I also am stage IV and don't hear much about remission in others with stage IV. Thus far I am responding to carbo/taxol/avastin, but I find myself very anxious.
Keep us posted!
- By cdbart
- Posted August 11, 2009 at 9:36 am
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I forgot the most important thing. Congratulations on the good news!
- By MinnieM
- Posted August 11, 2009 at 9:46 am
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Teri,
I'm so excited for you! It's wonderful to know that there are treatments that work well against platinum resistant clear cell.
Congratulations!
Minnie
- By tex2step
- Posted August 11, 2009 at 10:11 am
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Wonderful news! We are all so happy to hear good news and we know that you are pleased.
Keep us posted as you maneuver thought this clinical trial as we are all pulling for you.
Stacey
- By Shearaw
- Posted August 11, 2009 at 10:42 am
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Teri, To paraphrase the famous deli-scene lines from "Sleepless in Seattle": Yes! Yes! Yes! YES!....I'll have some of what she's having.
Go get 'em girlfriend! I am so happy for you.
Pjoseph, I'm another stage IV person heading for remission #2. I went into my first remission on the carbo/taxol/avastin combination. I send wishes for the same for you. Keep hitting those cells!
- By pjoseph
- Posted August 12, 2009 at 7:43 am
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Thanks Shereaw, It was very helpful to hear about your progress. I hope remission #2 lasts a good long time.
Can I ask how long remission #1 lasted?
Thank you!
- By Coachdunn
- Posted August 12, 2009 at 9:40 am
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FOR mouth sores mix: two liquids
1 oz of benadryl & 1 oz of Maalox....rinse , hold in
Mouth...swish! It worked for ME....
Thanks CVS pharmacist!!!!
- By SONGBIRD49
- Posted August 12, 2009 at 4:14 pm
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You Stage IV ladies are killing me with such good news to make my day. First of all, Teal Oak, Congratulations. And my 1st 9 cycles were the same as yours and the same progressions and my biggest worries is what is "within my liver" getting bigger every day. Went off the carbo and took Doxil for 2 months which did absolutely nothing for me and my progression worsened and my CA went off the charts! I have just had my 1st 3 weeks of Avastin with Taxol and feel better than I have in over a year including coming out of a depression I did not even realize I was in. I have found hope in my faith to be well again as I miss the old life I had. When my oncologist told me "you will never see remission the day you went to Stage IV" was one of the saddest days for me and I believe it was the day I lost my faith/hope with this disease. Everyone one of you today when you mention your remissions no matter how long/how short helps restores this faith for me. Thanks to all of you.
- By TealOak
- Posted August 12, 2009 at 4:23 pm
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To Shearaw--
BEST response ever!! I had to forward the comment to my Gyn-Onc and NP who both found it hysterical. Thanks
- By TealOak
- Posted August 12, 2009 at 4:28 pm
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Regarding mouth sores: I am using magic mouthwash; the new Caphasol solution ( hypersaturated calcium and phosphorous) less than a year on the market; the perident toothpaste and mouth rinse; oral l-lysine and l-glutamine and an antibiotic as my throat was just raw and swollen ( made a huge difference). I think the biggest issue is that both Avastin and Torisel work on pathways to disrupt cell growth, so nothing heals. I have some sores/rashes on my body that I have had for 6 weeks....they would normally have been totally gone in 2 weeks but mine look like they are only a few days old.
I have made a lot of dietary changes but just cant get a handle on the sores.
Teri
- By TealOak
- Posted August 12, 2009 at 4:37 pm
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Songbird 49
I was still optimistic when dx at stage 4 as I had optimal debulking. Then my CA125 dropped like a rock down to 5 after 2 cycles, so I was really optimistic for a meaningful remission. At cycle 5 it started inching up; PET showed 2 lymph nodes but Dr was thinking/hoping it was residual disease and not disease progression. PET after 9 cycles showed very aggressive liver mets ( SUV of 14.7). I was totally devastated. I completely understand what disease progression on first line chemo with liver mets means and all it's implications. The downside of being a Toxicologist is I know how to research stuff. sigh.
I was beyond bummed and felt pretty hopeless. I knew the fact that my Gyn-Onc wanted me to look at phase 1 trials as my 2nd line chemo told me that she didnt think she had much to offer me, either....not that would be meaningful ( and this is at MDAnderson with all of it's phase 2 & 3 trials). So while it is very early in this trial, I am delighted to have something working. Part of the idea is that clear cell ovarian responds like clear cell renal and Torisel is approved and successful on CCR; my tumor also tested positive for kinase and Torisel is an mTOR inhibitor which works on the kinase pathway.
Thanks for all the support.
Teri
- By Shearaw
- Posted August 12, 2009 at 7:06 pm
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Teri, Except I messed up the movie reference...it's from When Harry Met Sally.
Pjoseph, remission #1 lasted about 2 years from my lowest CA-125, to the discovery of 2 enlarged lymph nodes on CT.
- By godshome
- Posted August 30, 2009 at 10:08 am
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I just started on the clinical trial with avastin--Aug 25--I have 2 wonderful golden retrievers abey and maverick--Without them I would be crazy--Yours are beautiful--With the placebo-controlled trial I only wish I knew what I am getting. I just keep on saying to myself I can do all things through Christ who strengthens me.
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