Maintenance chemo

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Maintenance chemo

by Caren on Fri Feb 06, 2009 12:00 AM

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Thoughts on maintenance chemo seem to be divided.  Can you please share any experiences or thoughts on maintenance chemo.

My mothers situation:

-Suboptimally debulked with uterus remaining because of extent of disease.  Stage IIIC.

-Primary epithileal/PPC cancer

-Just finished 6th round carbo/taxol

-CA125 numbers were normal after 3rd round of chemo

-High grade, aggressive cancer

-Some neuropathy in hands and feet

-Option of maintenance chemo - Taxol once a month for 12 months

-Dr. doesn't want her to do it because of risk of more neuropathy and says no studies that show improves life expectancy.

Thanks for you help,

Chopps

RE: Maintenance chemo

by Harrietg on Fri Feb 06, 2009 12:00 AM

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hi! i begged for maintenance therapy, taxol, carboplatin , anything: received the same answer!. harriet

RE: Maintenance chemo

by LindaMae on Sat Feb 07, 2009 12:00 AM

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On 2/6/2009 Caren wrote:

Thoughts on maintenance chemo seem to be divided.  Can you please share any experiences or thoughts on maintenance chemo.

My mothers situation:

-Suboptimally debulked with uterus remaining because of extent of disease.  Stage IIIC.

-Primary epithileal/PPC cancer

-Just finished 6th round carbo/taxol

-CA125 numbers were normal after 3rd round of chemo

-High grade, aggressive cancer

-Some neuropathy in hands and feet

-Option of maintenance chemo - Taxol once a month for 12 months

-Dr. doesn't want her to do it because of risk of more neuropathy and says no studies that show improves life expectancy.

Thanks for you help,

Chopps

This sounds so 'close' to my set of circumstances - stage 3 PPC. Tho I did have a complete hysterectomy plus my omentum removed. Finished my carbo/taxol (6 treatments) the end of October '08. It took the full 6 treatments to get my CA125 down to 'normal'. No mention was even made re 'maintence chemo'. Taxol is the drug that gives you the neuropathy - and I still have some. The doc told me "all neuropathy may go away, some may go away, or none would go away" - I still have 'some'!.  If recurrence happens, they'll put me on Doxil which has a high rate of 'hand & foot syndrome' so I can understand the doctor's reasoning.

The only gals I personally know that are on any kind of maintenance are those with Breast Cancer - after radiation.

Come to the 'Chemotherapy' posts. There's a bunch of gals there and so far none of us have discussed 'maintence chemo' re Ovarian or PPC.

Blessings, LindaMae

 

RE: Maintenance chemo

by PigNm on Sat Feb 07, 2009 12:00 AM

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On 2/7/2009 LindaMae wrote:

 

On 2/6/2009 Caren wrote:

Thoughts on maintenance chemo seem to be divided.  Can you please share any experiences or thoughts on maintenance chemo.

My mothers situation:

-Suboptimally debulked with uterus remaining because of extent of disease.  Stage IIIC.

-Primary epithileal/PPC cancer

-Just finished 6th round carbo/taxol

-CA125 numbers were normal after 3rd round of chemo

-High grade, aggressive cancer

-Some neuropathy in hands and feet

-Option of maintenance chemo - Taxol once a month for 12 months

-Dr. doesn't want her to do it because of risk of more neuropathy and says no studies that show improves life expectancy.

Thanks for you help,

Chopps

This sounds so 'close' to my set of circumstances - stage 3 PPC. Tho I did have a complete hysterectomy plus my omentum removed. Finished my carbo/taxol (6 treatments) the end of October '08. It took the full 6 treatments to get my CA125 down to 'normal'. No mention was even made re 'maintence chemo'. Taxol is the drug that gives you the neuropathy - and I still have some. The doc told me "all neuropathy may go away, some may go away, or none would go away" - I still have 'some'!.  If recurrence happens, they'll put me on Doxil which has a high rate of 'hand & foot syndrome' so I can understand the doctor's reasoning.

The only gals I personally know that are on any kind of maintenance are those with Breast Cancer - after radiation.

Come to the 'Chemotherapy' posts. There's a bunch of gals there and so far none of us have discussed 'maintence chemo' re Ovarian or PPC.

Blessings, LindaMae

I think I remember hearing my doctor saying and my sister for that matter, that Doxil can be given for a long period of time without problems. If it works on me he may keep me on it for awhile, from last conversation with my sister who is a doctor herself. Maybe it is a maintance chemo drug, I will ask my sister who will call me one of these days. If not I will email her.

Nancy


 

RE: Maintenance chemo

by vickiv74 on Fri Feb 13, 2009 12:00 AM

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On 2/6/2009 Caren wrote:

Thoughts on maintenance chemo seem to be divided.  Can you please share any experiences or thoughts on maintenance chemo.

My mothers situation:

-Suboptimally debulked with uterus remaining because of extent of disease.  Stage IIIC.

-Primary epithileal/PPC cancer

-Just finished 6th round carbo/taxol

-CA125 numbers were normal after 3rd round of chemo

-High grade, aggressive cancer

-Some neuropathy in hands and feet

-Option of maintenance chemo - Taxol once a month for 12 months

-Dr. doesn't want her to do it because of risk of more neuropathy and says no studies that show improves life expectancy.

Thanks for you help,

Chopps

I'm sorry to hear that your mom's doc has said he doesn't want to do  maintenance chemo.  This disease is sometimes considered a chronic disease, I'm no doctor, but is that the only maintenance drug he can suggest?  I know everyone's disease is different, I hope he can find something else to offer.  Have you considered a second opinion ?

I am 51 and was diagnosed with oc stage 3c in Jan 07, have been on chemo pretty much since then.  Carbo/taxol, cisplatin/gemzar, etoposide (oral chemo), and now on Carboplatin and cytoxan (iv), my doc has said that what he is doing is considered maintenance, and he has more "stuff" up his sleeve.  He has mentioned the Doxil too, but it can be hard to deal with...    I'm not sure what is in store for me if this doesn't keep the beast at bay, but I will take whatever time I can get.. and I truly wish you and your mom the best.  Try to stay positive, and surround yourself with family and friends, the people you love, and take it one day at a time.

Good luck to you and your mom. 

 

RE: Maintenance chemo

by Caren on Fri Feb 13, 2009 12:00 AM

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Hi,

Thank you for your response to maintence chemo.  We are in the process of getting a second opinion.  I'll update when we decide what to do.  She is having a CT Scan in a couple of weeks, CA 125 a day before and meeting with the onc and then gyn/onc the following week.

I hope you continue to do well, and love to hear that your doctor is willing to do everything to fight the beast.

Good luck to you,

Chopps

RE: Maintenance chemo

by Caren on Fri Feb 13, 2009 12:00 AM

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Hi,

Thank you for your response to maintence chemo.  We are in the process of getting a second opinion.  I'll update when we decide what to do.  She is having a CT Scan in a couple of weeks, CA 125 a day before and meeting with the onc and then gyn/onc the following week.

I hope you continue to do well, and love to hear that your doctor is willing to do everything to fight the beast.

Good luck to you,

Chopps

RE: Maintenance chemo

by Donna_Gayle on Thu Feb 19, 2009 12:00 AM

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On 2/13/2009 Caren wrote:

Hi,

Thank you for your response to maintence chemo.  We are in the process of getting a second opinion.  I'll update when we decide what to do.  She is having a CT Scan in a couple of weeks, CA 125 a day before and meeting with the onc and then gyn/onc the following week.

I hope you continue to do well, and love to hear that your doctor is willing to do everything to fight the beast.

Good luck to you,

Chopps


Hi Caren,

 I am 69, have PPC and breast cancer.  Surgery 2 1/2 years ago, taxol & cisplatin which brought 125 down to normal, but it came back up after a year.  Now I'm on a maintenance chemo of gemzar and carbo platin.  It is much easier than taxol.  I did have neuropathy in my feet due to the taxol and still have it.  If I had a choice, I would never go back on taxol.  The gemzar seems to be working as I've been on it for 8 months , 125 is 9.

I don't know why few Drs. seem to be using gemzar.  Perhaps they feel it is too strong.  It does lower the white blood count drastically, so you have to take shots to boost your blood.

My oncologist gives me a PET scan (more expensive than CT) in order to determine the extent of the cancer.

Good luck with your mom.  Tell her to keep fighting.

Donna Gayle

RE: Maintenance chemo

by Caren on Tue Feb 24, 2009 12:00 AM

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Your experience is VERY helpful.  Thank you very much for the information.  My mother, after her 6th treatment of carbo/taxol, lost her eyebrows and eyelashes.  She does have some neuropathy, but it hasn't been too bad for her.

We are waiting to hear from the 2nd opinion on the maintenance.  I'm going to ask about gezmar. 

Thank you for your information.

Chopps

 

RE: Maintenance chemo

by PattL on Tue Feb 24, 2009 12:00 AM

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Hi, my name is Patt and I was diagnosed with 3C Ovarian in June 2004. I have never heard of maintenance chemo so I can't comment on that, but I will share my story as I am approaching the 5 year mark and doing well.  I was on carbo/Taxol for 8 treatments (once every 6 weeks) and my CA125 went down to 13.  I was off all chemo for two years until the CA125 rose to 250.  I then started Doxil and have been on that for over two years receiving it once every 4 weeks.  My CA125 is on the rise and was up to 128 so within the next few months they will change me back to carbo.  I have never missed a day of work because of the chemo.  I did have minor side affects but all were very tolerable.  I truly believe you must keep a positive attitude as you don't want to give up today and have them find a cure tomorrow.  I have been blessed with a great support group not only at home but at work.   There are also a lot of people that pray for me which is why I am still here and doing OK. 
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