Note to Jatoo

[plady]

Jatoo:

Just had visit with Onc and my mind is full of confusion and to be honest with you disappointment.

   Feb 21, my ca125 went up to 700. He wanted me to quit the Doxil and try a Clinical trial and when I suggested Avastin he said that he thought that would be good. My Doctor's office, more or less turned everything over to me to find clinical trials. I got set up at Arizona and then decided to go to M.D. Anderson first.  After 4 weeks with no Doxil my ca125 had gone down to 383.  With M.D. Anderson's suggestion for low Dose Doxil I have had one low dose.  Now in six weeks my ca 125 has gone up to 750.  But, when this dose was give I had been without chemo for 8 weeks.  

    Today, he acted like he wanted me to quit the low dose Doxil.  I told him how good I had been feeling, with minimal side effects, and asked him if he thought it might be o.k. to try the low dose, but have it every 3 weeks, instead of every 6 weeks.  He said that would be o.k., but then if it doesn't work, I had to agree to try something, else.  That made feel like he  was more or less saying he didn't agree with this decision, so I, point blank asked him if he thought this was o.k. and he said he thought it was reasonable.  This really bothered me. He also told me that he wanted me to try a regular drug instead of Avastin, just the opposite of what he told me last time.

I usually try to trust the Doctor and go with their suggestions, but I am really disappointed today and frustrated.  

I would really like your opinion on the decision, that I guess I made to continue the Doxil.  I guess that if it doesn't work, I will go back to M. D. Anderson in the future for all my care.  

Sorry for the venting and frustration, but I really needed to do this.  

thanks,

plady

[Helmar]

Hi plady... I don't like to 'butt in' on another person's thread either, but I can sort of feel your frustration through your messages to Jatoo, who is a wonderful source of information. I'm glad he's on our side. :-)
I've just finished my 7th treatment of Carbo/Taxotere, which I last had in 04 and it's worked well, bringing my CA.125 down from 7500 in mid December to the present 360 but it could be less after this treatment which I had yesterday. The Doxil worked well for me too, although my Oncol would only give me 4 shots at it. He said it's a good one for later, but he didn't want to use it now, as it's apparently harsh on the heart if one has too many. As I still want to go for more treatment to finish off what's still there after this one, my Oncol has suggested a combination for me, of tablets and lose-dose IV. He did not mention anything by name, but I see him at the end of this month, and he is going to chat with me in-depth on what he thinks, at that meeting. I too have microscopic residue, and the only time off chemo was 9 months after my operation and chemo in '04. It's been an ongoing battle for me too, but I'm feeling really well...even today after the chemo yesterday.
Please let's know how you are doing, and when I get some info on my next step, I will let you know too. Maybe my Oncol. can come up with something for us both.:-) I'm looked on as a miracle here, as I wasn't expected to survive for too long after my operation... the cancer had run rampant all because of the idiot G.P. telling me I had IBS everytime I went to see him.
Wishing you all the best... and please try not to let this get to you. That only makes it worse, I think.   Hugs...Helen..

[Jatoo]

Dear Simply Star and Plady:

Here's the page that show how Sorafenib (Nexabar) which is similar to Lapatinib (Tykerb)  both Kinase inhibitors work on the cancer. Sorafenib decreases cell proliferation and angiogenesis (feeding of tumors).

http://www.nexavar.com/wt/page/hp_about?gclid=CJzsy8XLuosCFQZtYAodRHahzQ

There are many down days, so don't believe Leslee for now. The way to combat psychological problems are prayers. I think they also have a clinical trial on this also at MDA proving that prayers work (quite surprising). When you research Tykerb, use the generic name Lapatinib. I hope this helps.

Jatoo

Dear Plady:

The reason why Oncs discourage Avastin in a way is because it is not FDA approve. And I understand because of liability. Just imagine recommending Avastin to you and you had a perforation? He can be liable. Understand? So even though they may believe that Avastin can work for you, they may not be upfront to recommend it to you.

My wife went on weekly Taxol and it didn't work. Although the strong dose Taxol ( 3 weeks) could have been different. Again no study on whether CarboTaxol can work again on platinum-resistant patients. What has been proven was that the cancer has shown resistant to the combo in a short span of time. Does that make sense? So one thing at a time. Allow Doxil to do its job. I pray.

Everything will work out for the good.
Jatoo

[plady]

Dear Jatoo:

Your're right.  I have slept my frustration.  Thank you for your support.

I looked at my diagnose and this is what it reads:

Right ovary:  Ovarian High Grade Serous Carcinoma.
                    Carcinoma involves the fallopian tube.

Left ovary:  High Grade Serous Carcinoma involves
                 the omentum, ovarian surfrace,fallopian tube,
                 and uterine serosa

Cerivs, no tumor present

Arophic endometrium.

I guess this means that I do have an agressive cancer. I'm not sure.

My husband and I have decided to go ahead with the low dose Doxil every three weeks and see what happens for two treatments, unless the ca125 goes up dramatically after my first treatment.  If that doesn't work, we will return to M.D. Anderson.  The Doctor there said to come back to him if Doxil doesn't work, because he had another plan for me.

Right now, all I can do is pray and live every day NOT FRUSTRATED, HA.  Life is to precious to be frustrated.

HOpe you and your wife are doing well, and my prayers are with you.

thanks,

plady

[plady]

Jatoo:

I always walk away from computer and then remember something I forgot to say.

I guess the most confusing thing I have going right now is why my Doctor two months ago wanted me to try Avastin in Clinical trial and not do a regular drug then, and now he wants me to try a regular drug and not Avastin.  Am I missing the reason for the change?  Just curious and confuse about this.  Also, do you mean that I probably won't be doing Taxol, and other platinum drugs in the future at all or is ther sometime when that will be a possiblilty?  

thanks,

plady

[plady]

Dear Simply Star:

Keep the faith.  I had one of those days yesterday, with the same kind of frusttration that you have.  We have to be realistic, but I also am determined to fight with whatever I have to continue.  My prayers are with you.

plady

[SimplyStar]

Hate to butt into this thread but since you mentioned  Tykerb to plady,  do you think the combo of Topotecan and Tykerb is good?  Feel kinda disheartened  by Leslee's response this time,  not to the chemo, but she says if this doesn't work,  she will quit.  I just can't let her do that.  She refers back to the doctor here that told her 2 years and Doxal would give her time to put her "affairs" in order.  Mayo did not agree with this, and said she had a good chance with this clinical trial.  Why are there so many differing views from the Onocologists?  I cannot find any references to Tykerb being used with OVCA, just BC.  Just what does a kinase inhibitor do to the cell?  Since she only has the 3 small lesions on the abd wall, and rest of body shows clean, and a CA125 of only 72 prior to chemo starting,  I would think it should be easy to clean them up.   How do we talk her into continuing to fight if this doesn't work?  I marvel at you and Melody.  Leslee's husband  simply goes with anything the doctors tell them,  he debunks my research, but Leslee asks  for it,  She said they told her the names of the drugs , what the side affects are, what she cannot take or do while on the trial but nothing else.  Is there a place on the net where results of clinical trials are listed?  Sorry to put so many questions to you, but this is one of my down days, and look where I can, I cannot find these answers.  

[Jatoo]

Dear Plady:

I emphatize with what you are feeling right now. We and many others have many times been in this predicament. So stay cool for now although I know it is not that easy.  

Here is my opinion:

1. First ask your onc what grade your cancer is. The pathology reports will tell you. I know it is 3C (stage) but that is not a grade. It will be a 1, 2 or 3 with 3 being the most aggressive. My guess is yours is not that aggressive because it has remained microscopic.

2. Now we have come to a point where there are no right or wrong answers. The reason why I am not surprised why your onc is acting that way. I don't see any fault, but again there are no straight answers or research saying that this is the right drug that you will have to use. Meaning you can stay with low dose Doxil for maybe one or two more treatments and it will be "okay". Nobody really knows how the drug will perform, only probabilities. Going back to Carbo Gemzar may still work although it has been proven in the past that the cancer returned after three(3) months "proving" that you are "platinum-resistant". Probably not on Gemzar but CarboPlatin (platinum drug).

3. Probabilities. Being platinum-resistant limits you on going to Taxanes (Taxol, Taxotere, Docetaxel, etc) or Platins (Cisplatin, Carboplatin, etc) just as easily if one were not platinum resistant. That is why the options are Doxil, Topotecan or Gemzar. That is why my wife has not gone back to CarboTaxol because she is also platinum-resistant.

4. At this stage clinical trials have good probabilities of conquering your cancer if not putting them in "sleep" mode meaning stabilize them. That is why I have been mentioning biologic or monoclonal drugs like Avastin (Bevacizumab) or Kinase inhibitors (Sorafenib, Lapatinib (Tykerb)). Another would be VEGF Trap.

5. I told you before that being with MD Anderson gives you an edge. I think they have a Sorafenib(Nexabar)-Bevacizumab (Avastin) clinical trial going on right now. To me that would be an excellent option. You can always go back to Doxil or Gemzar. It will always be there. Avastin-Cytoxan would also be a good choice. Avastin alone can even be better since it has complete remissions based on clinical trial. VEGF Trap would be another one. We agreed on clinical trial with Avastin and another biologic drug, but we were kicked out at the last minute.

I hope this can help. I pray that you will get the right one.

Jatoo

[plady]

Jatoo:

I got to rambling and forgot to ask you something important.
I asked my ONC about returning to Carbo/Gemzar because it has been two years now since I had that drug.  He said that it the cancer reoccures in a short time like mine, three months, that it means that drug won't work for me again.  I though I had been reading that you could go back to the platinum drugs after 2 or 3 years.  Would like you input on this.

thanks,
plady

p.s.
when I was on Cargo/Gemzar my ca 125 went down to 8 and stayed there for 3 months.