Taxol consolidation treatment # 8

Hissy_Fitz
Hissy_Fitz Member Posts: 1,834
edited March 2014 in Ovarian Cancer #1
Saw my doctor today and got Taxol maintenance number 8. I asked him about Metformin, and he has read some papers on it but no clinical trials. He has a wait-and-see mind set as far as using it for maintenance and/or treatment. Inter sting note....I did not know this, though some of you might have, he remarked that, "We had everyone on Celebrex for a while because it seemed to work for a few people, but we soon found out those people would probably have done just as well without it."

So-called maintenance chemo seems to be going the way of Celebrex. He told me I was probably one of the last patients in his practice that would be getting it. "But we have started it," he said, "so we are going to finish it." Amen, Dr M.

I said I am a big fan of Taxol maintenance because I feel like it has given me a year of good health, and probably 10 more months, at least, without a recurrence. He said maybe....or maybe I would have done just fine without it. I was NED before I started it and who's to say I would not still be NED, even without the extra Taxol.

I told him that if any of us had a crystal ball, we wouldn't have to guess but since we don't I vote for more "do" than "don't".

January is my last infusion and after that, I'm done, unless I have symptoms or my CA125 starts going up. I can tell you, I am not looking forward to that whole wait-and-see thing. He does blood work just every 3 months for his NED girls....YIKES. I've been used to getting mine every 4 weeks and that's gonna freak me out, for sure.

The new port worked fine, except I have developed a strange rash on the entire left side of my neck/chest. Dr M thinks it's probably a topical reaction, from some of the soap they gave me to wash with. I look like I have the onset of measles.


Oh, and my tubing came apart during treatment - at one of those plastic junctions - and the Taxol was running all over my hands (where I grabbed it) and down onto my feet. The nurses broke out full-fledged Haz Mat gear. I kid you not. Goggles and special gowns and all kinds of stuff. I said, "Wow....who knew this stuff you are pumping into my body was so dangerous?" They packaged my footies up in a bio hazard bag and told me 4 times to wash them by themselves and DO NOT TOUCH THEM. Good thing I changed out of my shoes. I would have had to throw them away.

And how was your day?

Carlene

Comments

  • kikz
    kikz Member Posts: 1,345 Member
    #2
    Killer chemo
    When I told my shrink how hard my last rounds of chemo were she told me they get you as close to death as possible then get you well only to do it again. Today when I told my doctor how hard the chemo was he said they almost kill you in order to kill the cancer. Wow, nobody better ever say we aren't tough.

    Karen
  • froggy1
    froggy1 Member Posts: 205
    #3
    The Amazing Hissy
    Carlene,
    I really do hope you are writing a book. I think it would be on the New York Times bestseller list in no time. How do you manage to pull off this unusual happenings? You must have felt real great with that stuff running all over you. Wow.
    I'm kind of saddened to hear you doc's views on maintenance chemo, yet I'm not surprised. My new doc, in the same practice, does not believe in it. As you recall, I did a year. (Didn't figure out my dosage yet.) I may have had 18 months with no chemo, in remission, which may not have been a bad thing.. Now, I can't use taxol for the remission. While the maintenance was no big deal, I only had 3 1/2 months without any chemo.
    I think we're all just guinea pigs. I see little concensus among doctors, as far as approach to beat this beast. It is discouraging. 'Hoping for a breakthrough. Ginny
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #4
    froggy1 said:

    The Amazing Hissy
    Carlene,
    I really do hope you are writing a book. I think it would be on the New York Times bestseller list in no time. How do you manage to pull off this unusual happenings? You must have felt real great with that stuff running all over you. Wow.
    I'm kind of saddened to hear you doc's views on maintenance chemo, yet I'm not surprised. My new doc, in the same practice, does not believe in it. As you recall, I did a year. (Didn't figure out my dosage yet.) I may have had 18 months with no chemo, in remission, which may not have been a bad thing.. Now, I can't use taxol for the remission. While the maintenance was no big deal, I only had 3 1/2 months without any chemo.
    I think we're all just guinea pigs. I see little concensus among doctors, as far as approach to beat this beast. It is discouraging. 'Hoping for a breakthrough. Ginny

    You know, the Taxol did not
    You know, the Taxol did not affect my skin at all. That's why I could not figure out what all the hoopla was about. The nurses were pouring stuff all over my hands and feet to wash the Taxol off, but I never felt a thing - no burning or anything. And tonight, there is still no sign of redness or burning, etc.

    My story would scare anyone to death, if they were just starting out. I don't know why I'm doing as well as I am. My doctor is pretty surprised himself. Lucky for me, my doctor isn't God.

    Ginny....you might have had an 18 month fling with NED without the year of Taxol. And then again, you might have recurred within six months of your initial treatment, if you hadn't tried it. Who's to say? I will never know for sure if it helped me or not, but I wanted to try it. My doctor left the decision entirely up to me. And he has offered - almost encouraged me - to discontinue it several times since we started. I always said, "No."

    You are right, there is not much in the way of "standard" treatment (other than carbo/taxol for first line treatment). My doctor is even stepping way back on the number of patients he will try IP chemo on. He says only about 4 out of 10 can tolerate the whole course, and then they lose valuable time getting back to a point where they can start IV treatment. He said today he does not know anyone prescribing Metformin, but at least one person on CSN is taking it (Clamryn?). Most doctors won't consider surgery if we develop a bowel obstruction, but Jayne Armstrong (from Inspire.com) is probably alive today because they have done 7 or 8 surgeries to remove obstructions and re-route her intestines. What a crap shoot this is!

    Carlene
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #5
    BUMP
    bump
  • Mwee
    Mwee Member Posts: 1,338
    #6
    Hissy_Fitz said:

    You know, the Taxol did not
    You know, the Taxol did not affect my skin at all. That's why I could not figure out what all the hoopla was about. The nurses were pouring stuff all over my hands and feet to wash the Taxol off, but I never felt a thing - no burning or anything. And tonight, there is still no sign of redness or burning, etc.

    My story would scare anyone to death, if they were just starting out. I don't know why I'm doing as well as I am. My doctor is pretty surprised himself. Lucky for me, my doctor isn't God.

    Ginny....you might have had an 18 month fling with NED without the year of Taxol. And then again, you might have recurred within six months of your initial treatment, if you hadn't tried it. Who's to say? I will never know for sure if it helped me or not, but I wanted to try it. My doctor left the decision entirely up to me. And he has offered - almost encouraged me - to discontinue it several times since we started. I always said, "No."

    You are right, there is not much in the way of "standard" treatment (other than carbo/taxol for first line treatment). My doctor is even stepping way back on the number of patients he will try IP chemo on. He says only about 4 out of 10 can tolerate the whole course, and then they lose valuable time getting back to a point where they can start IV treatment. He said today he does not know anyone prescribing Metformin, but at least one person on CSN is taking it (Clamryn?). Most doctors won't consider surgery if we develop a bowel obstruction, but Jayne Armstrong (from Inspire.com) is probably alive today because they have done 7 or 8 surgeries to remove obstructions and re-route her intestines. What a crap shoot this is!

    Carlene

    Oh, Carlene
    What a time of it you are having! I've been following your progress with your maintainenece chemo because my Dr. suggested that we might go that route once my counts reach the normal range. I'm on the fence on whether to do it or not. I'm currently into the eleventh month straight of chemo. This gemzar/carbo one week and gemzar the next is lowering my counts, which is wonderful, but it's taking an enormous toll on me. I so need a break to regroup.


    I can only imagine the extreme reaction that you were faced with when the taxol spilled on you. I had a reaction to carbo/taxol once where I started to get flushing up my back and long story short, they treat me like I'm going to expire every time I get infused with any type of chemo. Bring out the Hazmat suits! I'm glad you've had no rashing.
    (((HUGS))) Maria
  • clamryn
    clamryn Member Posts: 508
    #7
    Hissy_Fitz said:

    You know, the Taxol did not
    You know, the Taxol did not affect my skin at all. That's why I could not figure out what all the hoopla was about. The nurses were pouring stuff all over my hands and feet to wash the Taxol off, but I never felt a thing - no burning or anything. And tonight, there is still no sign of redness or burning, etc.

    My story would scare anyone to death, if they were just starting out. I don't know why I'm doing as well as I am. My doctor is pretty surprised himself. Lucky for me, my doctor isn't God.

    Ginny....you might have had an 18 month fling with NED without the year of Taxol. And then again, you might have recurred within six months of your initial treatment, if you hadn't tried it. Who's to say? I will never know for sure if it helped me or not, but I wanted to try it. My doctor left the decision entirely up to me. And he has offered - almost encouraged me - to discontinue it several times since we started. I always said, "No."

    You are right, there is not much in the way of "standard" treatment (other than carbo/taxol for first line treatment). My doctor is even stepping way back on the number of patients he will try IP chemo on. He says only about 4 out of 10 can tolerate the whole course, and then they lose valuable time getting back to a point where they can start IV treatment. He said today he does not know anyone prescribing Metformin, but at least one person on CSN is taking it (Clamryn?). Most doctors won't consider surgery if we develop a bowel obstruction, but Jayne Armstrong (from Inspire.com) is probably alive today because they have done 7 or 8 surgeries to remove obstructions and re-route her intestines. What a crap shoot this is!

    Carlene

    Metformin
    Hi Carlene, Yes I am taking the Metformin. Next week I will be getting my CA125 and then on December 15 I will get a PET/Scan. I started on the Metformin on October 17. So I will be on the Metformin for 2 months and then we will see if it is working for me. I will keep you posted.

    Carlene you are amazing. I can't believe all the things that have happened to you. If you write a book, here is one of my experiences that you can include. This happened to me years ago when I first found out I had OVCA. After my surgery, I received one radiation treatment that was injected through the abdominal wall. It was called P132. I was the 10th person to receive this at the hospital where I went. All the doctors were so excited to just watch me get injected with it. Craziest thing I ever saw. They paged them all over the hospital to meet for my injection. Well when I was getting ready to be released from the hospital they came with a machine (I always called it a geiger counter) and they went all over my room. They went all over my body and they threw my sheets away from the bed. They put me in a wheel chair and followed me out of the hospital with the machine. They said they were checking to see if I was "hot". I was told not to get near pregnant women and to not hold a baby for 2 weeks.

    Linda
  • lindachris
    lindachris Member Posts: 173
    #8
    Leakage
    When having IP therapy the port in my wife's stomach leaked. Taxol did burn her skin white. I wondered at that point, "How can it be the body can take this inside and yet the skin outside cannot?" And the attending medical oncologist came in to look at Linda and I think his career was flashing before his eyes. But it was only Easter Sunday. Nothing out of the ordinary.

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