Change in Chemo Protocol

[katditty]

Hello all, haven't been here for a while.  Quick recap: was DXed stage 3c OC in Jan. 06, had intensive IP chemo w/Cisplatin & Taxol through Aug. 06, was in remission for not quite 6 months, cancer recurred in June 07 w/implants in liver and spleen.  Have been on Topotecan/Avastin protocol since June 21st, but my CA-125 keeps climbing, even while on the chemo.  Also, the travel to Seattle Cancer Care Alliance from San Juan Island (several hours drive plus hour and a half ferry ride each way, have to spend the night in Seattle for each chemo) had become just too much for both my husband and myself on top of the chemo, so we are in the process of setting up to get my chemo closer to home while keeping my Gyn. Onc. at the SCCA as primary, and having screen scans done there.  I just had another CT scan to determine whether tumors are growing; my Gyn. Onc. is saying, if the tumors haven't changed, she wants to stay with the Topo/Avastin protocol despite the rising CA-125, but if they are growing, she wants to change to either Gemzar or Doxil.  When I asked if we can still do Avastin, she said not if we go to Doxil, and she doesn't often use the combo with Gemzar (I may have that backwards, not sure).  In any case, now we are waiting for the results of yesterday's scan to find out if we will be making a change.  I know many of you have mentioned Gemzar and Doxil and I'm sure I can get lots of clinical information on those on the web but I would like the input of those of you who have used them; I have so many questions.  Like: with Topo/Avastin, I've had no hair loss.  Will I lose my hair again with Doxil or Gemzar?  What about quality of life - will nausea be a serious problem?  And does anyone know why my Gyn. Onc. wouldn't want to combine either of these with Avastin, when the original Topo/Avastin protocal goal was to get the CA-125 down as low as possible, and then drop the Topo and stay on the Avastin indefinitely?  I know Jatoo has a lot of experience with the Avastin protocols, does anyone else have any input?  I'm confused because, before the CA-125 bagan to rise again, my Gyn. Onc. told me she thought the Topo/Avastin was my very best bet for longer-term survival, and now that it has apparently stopped working we seem to be going to options she didn't think much of earlier - I feel like this is almost a last ditch effort to prolong my survival, but I don't really know if that's accurate or if I'm simply feeling frightened and confused by all the changes happening.  I asked her about adding hormone therapy to the chemo and she really didn't think that was a good idea for me.  I have severe IBS which becomes quite debilitating when cancer is active, and when I am on chemo, so I have concerns about the chemo drugs that are harder on the digestive system.  And I'm wondering if these 2 options she's presented me with are the best, or should I be looking for something else?  Please advise!

[katditty]

Thank you so much for your input.  We are still waiting to hear what the CT scan showed, and that is very frustrating, as you all know.  I believe my Gyn.Onc. did test the tumors after the original massive debulking surgery and ruled out hormone therapy based on those tests.  I am now platinum drug resistant so don't know if I can use Taxotere/Carbo.  I also have no idea how I will do with single agent treatment, as I have always had combos before.  It's not so much that I am worried about losing my hair again - I wasn't bothered by that, and I have lots of lovely hats and plan to get a wig or 2 this time as well to get me through the winter.  I am much more concerned about what I am hearing about platelet counts being affected, and about the nausea, blood in stool, etc., since I already have severe IBS and it is so debilitating by itself, and every single thing we do to treat the cancer throws more IBS wrenches into the works... At the same time, I need more time with my family and I don't feel ready yet to say, "no more treatments".  It's just all so hard sometimes!  I will let you all know what is decided as soon as I get the CT scan results back.  Bless you all, Katherine

[Helmar]

Hello...As you may have read, my CA.125 was 7500 in December last year. My Oncol. gave me 5 daily doses of Topotecan and then monthly Taxotere/Carbo for 6 months, and my numbers dropped down to 290. They went up rapidly with the Topotecan, but my Oncol. predicted that as he says it 'splits the cells' and the other combination cleaned them up nicely. Could this be an option for you? Can you take Taxotere/Carbo? This isn't as harsh as Taxol/Cisplatin, but according to my Oncol. it works just as well. Of course we are all different in how these drugs work for us, but I didn't have much joy from Gemzar.... or single agents... I seem to do better with a combination. The Doxil worked great, but it takes 3 or 4 treatments before there is some progress, as the numbers quite often go up for the first couple. Don't get too upset about losing your hair.... it will grow again. The more important aspect is that you are still here.... hair is a secondary consideration for me. I've had none for over 3 years now.... :-).... but I'm enjoying my life.
Wishing you all the best with your decision. Let us know how you are doing... hugs...Helen...

[gah_70]

I am currently on Gemzar as a single agent.  My doctor was going to add Avastin, but it is not approved by the FDA for Ovarian Cancer yet, so my insurance will not pay for it.  It is quite expensive.  But, we had reservations about adding it anyway, because I have Crohn's disease.  In some studies, Avastin has been shown to cause GI perforations.  Perhaps with your IBS, your doctor doesn't want to chance it.  I believe it was a small number of cases where that happened, though.  

I, too, was on Topotecan before Gemzar.  I had a wonderful intial response, but after my second week's treatment, my CA125 more than doubled.  The Gemzar seems to be helping clean up the mess it caused, however.  I usually start feeling sick to my stomach and fatigued 2-3 days after treatment.  I take Anzemet for nausea, and it works pretty well for me.  I stay anemic, and Procrit doesn't usually make a big difference for me.  I will hopefully start Arenesp soon.  Gemzar is also hard on platelet counts, so you and your doctor will need to watch out for that.  I am on Lovenox for a blood clot in my lung, and I had a treatment today.  Will have to be on the lookout for falling platelets so I'll know when I need to stop the Lovenox.  By the way, my hair is growing back now that I am on Gemzar.  It's slow, but it's growing!

Do you know if your tumor was tested for estrogen and progesterone postive receptors?  If not, you might ask about having that done.  That would be a good indicator to tell you if hormonal therapy would be a good choice for you.  I am currently on Femara, but the testing was never done on my tumor.  I went to MD Anderson in Houston last week, and the doctor there is going to do those tests.  He says if it comes back negative, I don't really need to take Femara, because it won't really do me any good.  Again, though, there are so many studies out there about it, and some may disagree with that assessment.  

There are so many different protocols out there, it's hard to make a decision about which one is best.  I have not had Doxil yet, but I believe it could possibly be next should Gemzar not work for me any longer.  Doctor said today he wanted to add Navelbine to the Gemzar.  That's a new one on me, so I will be doing some research this week.  My best advice (which I hope is not too lame) would be to do your research, and help make the decision which protocol you'd like to try.  Best wishes to you as you make the decision.  Here's hoping we can all kick this where it counts!

Gail :)  

[rmarie]

i have just finished 6 treatments of doxil and carboplatin.  The doxil and carbo were every 28 days, all in all, I don't think it was very bad.  The rules are no exercise, use of tepid water for a day before and 3 to 4 days after.  The side effects I experienced were, anemia, corrected with procrit, a skin rash (went into a PT pool for exercise)and constipation, the week after.  I get nauseated after the treatment but not bad, hair is thinner but still on my head.  I have not missed a day of work.  This is a stinking disease, and there are a number of combinations that are in use.  I send you positive energy, keep us posted.

[linda.50]

I can respond to only two of your concerns.  I am currently on Gemzar after being in remission for just about 6 months -  have finished 2 cycles of 3 weeks on , 1 week off.  At first, I felt pretty good after the first 3-4 days had passed after the treatment - fair amount of energy, etc.  I usually take Zofran for the 3 days following the treatment to keep the nausea under control - and Lorazipam at bedtime which works well.  Now into the middle of the 'off-treatment' week and am still feeling a bit of nausea and very fatigued.  I just want to sleep all day.  No hair loss though!  I'm due for another treatment on Monday and will check in w/my oncologist re: these side effects.

Good luck with your treatment.