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To chemo again or wait

2timothy1 7's picture
2timothy1 7
Posts: 331
Joined: Jan 2012

Hello everyone just wondering if you gals have had similar experience. My ca 125 is on the rise. 20Aug,49dec,73january.

Doc says its up to me when I wanna start chemo. She says a study showed it didn't make much difference if I waited till I had symptoms or start  chemo now. 

Ct scan only showed slightly enlarged periaortic lymph nodes.

This is my first recurrence. Been in remission since May 2012. Just not sure what to do. Wondering if anyone has similar circumstance?

 

Thanks!

kikz's picture
kikz
Posts: 1266
Joined: Jun 2010

and surgeon both agree that they do not want to use chemo until I become symptomatic.  I am feeling great right now even though my CA 125 is on the rise.  I have been on Tamoxifen for six months and my CA 125 had decreased each month until November.  If I had chemo now I would feel sick and It doesn't make sense when I feel so healthy.  I guess they feel as your docs that it doesn't make any difference if they blast it now or later but if I did have chemo now the quality of life I have would be lost.  What I try to get across to my docs is that the thought of letting the monster grow until they deem it necessary for chemo is a little frightening to say the least.  I have been reassured that in that interim if need be they would move ahead with the chemo.   

I will have my monthly blood draw on Tuesday and depending on that result, I may have a petscan.  My onc has explained that there are other drugs and other forms of chemo before we resort to the big guns.

I hope this helps you in some way.  It seems we are kind of in the same place.  My best to you.

 

Karen

2timothy1 7's picture
2timothy1 7
Posts: 331
Joined: Jan 2012

For responding. That's great that you're numbers  were going down due to the tamoxifen. I suppose you are not having any side effects from that? 

My onc never mentioned any other treatment other than chemo. This this gives me something else to consider.

Best of luck to you.

Thanks

Shawnna

kikz's picture
kikz
Posts: 1266
Joined: Jun 2010

I have noticed is hot flashes.  I never even had them during menopause.  They are minor and come and go before I know it.  I do get sweaty when I exert effort like cleaning up around the house.  At night I am sometimes awakened by a hot flash and have to throw the covers off for a bit.  All in all it is not anything to complain about.  

I have also had anxiety and fatigue a few times...but is that the medication, the disease or just whatever?

 

Karen

 

 

2timothy1 7's picture
2timothy1 7
Posts: 331
Joined: Jan 2012

Hot flashes. I wonder if the tamoxifen somehow blocks estrogen, therefore causing the increase in hot flashes.

 

True, our bodies have been through so much. It is hard to say what is causing what.:)

Shawnna

kikz's picture
kikz
Posts: 1266
Joined: Jun 2010

exactly, Tamoxifen is an estrogen blocker.

MJensen
Posts: 93
Joined: Oct 2012

Hi Shawnna,
My Dr said the same thing. When I had my first recurrence it was Feb 2011 and we didn't start treatment until Sept. He said studies hadn't shown any advantage to start treatment too soon and it was good to let my bone marrow recover some after my first round of treatment. It just seems to go against what our gut would tell us. Once you think about the disease being back you feel like you want to knock it down as soon as possible. Maybe you could try some non chemo treatment in the interim like metformin? I wish you all the best! Keep us posted. Michele

2timothy1 7's picture
2timothy1 7
Posts: 331
Joined: Jan 2012

Thanks Michele. I've been on metformin since dec.  are you in remission now? what chemo are you taking?

lovesanimals's picture
lovesanimals
Posts: 1209
Joined: Sep 2011

I like the fact that all of your doctors seem to be saying the same thing - that starting chemo again too soon isn't necessarily the best move and it's maybe better to wait until you start to experience symptoms.  I have a question though.  What kinds of symptoms are we talking about?  Abdominal pain?  Excessive bloating?  Pain elsewhere? 

Thanks,

Kelly

 

2timothy1 7's picture
2timothy1 7
Posts: 331
Joined: Jan 2012

My onc didn't mention symptoms. She just said the long  term survivor time doesn't seem tchange whether  I start now or when my ca 125 gets higher. I just assumed what she meant by ca 125 getting higher was the onset of symptoms.

MJensen
Posts: 93
Joined: Oct 2012

Hi,
I am not in remission. Far from it actually. When I started back on chemo in Sept 2011 I went to Gemsar, then Avastin and a chemo pill, then Doxil and most recently Topotecan. So basically I have been on chemo since starting back up. My CA 125 is 1800 and I have a lot of abdominal pain. Spent the day after Christmas in the ER and most time in bed ever since. My bone marrow had too many low counts to start chemo again. Plan is to start on Wed with weekly Taxol. Back to the first treatment. I have bad neuropathy so we have to watch the taxol carefully. But i can't handle the cramping and throwing up any more so hope it will help.....otherwise I am not sure if there are other options.
In 2011 I felt good, did a trip to Panama with my family and last year (2012) did a cruise with family and friends last April. I turn 60 next week and would normally have an awesome vacation planned.....not this time.
If you are feeling good I would enjoy your good health. Please let us know what you decide to do. I was hoping metformin would show some positive results for some of the people on this board. If I can knock down my cancer again I want to try it......good luck to you! Positive thoughts and energy always! Xo Michele

2timothy1 7's picture
2timothy1 7
Posts: 331
Joined: Jan 2012

Thanks Michele

Happy early birthday to you! Hope you begin to feel better soon!

There is a company I've heard about called CBA Pharma that has been working on a drug for 18 years to help with chemo resistance in tumors. The are awaiting FDA approval but the drug can still be bought. 

Im keeping this info in my pocket for future use. You can google CBA Pharma if you'd like more info. Apparently there doesn't seem to be any harmful side effects.

positive thoughts and prayers to you

Shawnna

childofthestars's picture
childofthestars
Posts: 246
Joined: Jan 2011

Hi Shawnna

My onc feels the same as most others .... that is to wait until there are symptoms before starting further chemo as there have been no benefits shown to starting chemo any earlier.  Thankfully I have not had a recurrence since my initial dx and treatment in June '10. 

Michelle

 

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