Newly Diagnosed

2»

Comments

  • 2timothy1 7
    2timothy1 7 Member Posts: 345
    #22
    lovesanimals said:

    Hi Cathy
    You have good reason to be hopeful and optimistic. There are many long-time survivors, some of whom are on this board. Come October 11, 2012, I will be two years NED (no evidence of disease). One of my friends is a nine-year stage 3C ovarian cancer survivor, and she just recently returned from a cruise to Alaska, one of many, many trips she has taken since being diagnosed.

    It's my understanding that many of the effects of chemo can be cumulative, which means that they may not be for you. As a stage 2b, I myself had six sessions of carbo/taxol every three weeks during a three and a half month period of time. I had a lot of fatigue, lack of appetite and constipation usually just for the first five or so days after each session and then after that, I felt pretty darn good. To keep ahead of any potential queasiness, I took a couple of prescription anti-nausea pills the evening after each session and I never experienced any nausea or vomiting.

    Please keep us posted when you can. We're here for you.

    Take care,
    Kelly

    Hi Kelly
    I noticed you said
    Hi Kelly
    I noticed you said your friend is a 9 yr survivor. That is so encouraging to hear. Would you mind sharing if your friend has adjusted her lifestyle or done anything other than conventional treatment.
    Thanks
    Shawnna
  • Carsen928
    Carsen928 Member Posts: 8
    #23
    Hi Cathy: I have been doing
    Hi Cathy: I have been doing the weekly treatments since diagnosed May 7. I had taxol, carboplatin and avistan cycle 1 and taxol only cycle 2 and 3. The first treatments are the hardest and then it gets easier from there. You will get to know how your body responds. For me, I have my treatments on Friday and I am feeling great until Monday . Monday is my me day and I usually feel a little nausea and need a good 3 hour nap. I heard it was going to get harder as I had more but it wasn't like that for me. But listen to your body the first couple rounds so you are not planning and pushing yourself on a day you know you won't have your A game going. Also, if the meds they gave to you are not working 100% then ask for another series. I take zofran the first 2 days and then another one a third day( can't think of the name) also I was getting nausea confused with acid stomach which my nurse pointed out to take pepcid everyday and that was a huge difference. I am on my 6 round of 3 cycles. Havingi taxol weekly is sometimes considered a heavier dose then one time every 3 weeks so sometimes your blood counts may not be high enough to have treatment. I mention this because it happen to me twice but the first time it scared me. It was not a big deal, they gave me a shot of a cell stimulator and I was ready to go the following week. In my thoughts and prayers - Dawn
  • Alnik
    Alnik Member Posts: 56
    #24
    Tethys41 said:

    Ice
    I also held ice and iced my toes during the infusions of Taxol, which is the drug I was on that could cause neuropathy. I also received a vitamin B6/B12 injection the days before each of my infusions from my naturopath. I had almost no neuropathy throughout my treatment. There are also cold caps that are said to be effective at preventing hair loss due to chemo. I didn't know about those until after I lost my hair. I did start icing my head during the Taxol infusions on my second treatment, and had about a half inch of hair by the end of treatment. I don't know how much water you should drink after chemo. But you should drink a lot.

    any truth about ice
    i was told that the ice caps could possibly slow down the effects of the chemo if used to prevent hair loss .not an expert on the subject but i knew i was not going to take a chance and god forbid have to do more chemo . However i wish i new if it was safe because my neuropathy is brutal after carbo/taxol as well
  • Alexandra
    Alexandra Member Posts: 1,308
    #25
    My chemo experience
    Hello Cathy and welcome.
    Below is my experience with IV chemo (taxol / carboplatin every 3 weeks) - I had 4 rounds so far and now I am waiting for the debulking surgery.

    1st round: day 1 after chemo was great, lots of energy and great appetite thanks to steroids. Days 2 through 5 were bad - puking my guts out, fatigue, lost a lot of fluids. 2 weeks after that - no problem at all. Hair fell out on day 13.

    2nd and 3rd round: they changed my anti-nausea meds and I felt great for 6 weeks, ate everything I could find and was gaining weight. No one believed that I am on chemo.

    4th round - still no nausea or vomiting and keep gaining weight. The day after chemo peripheral neuropathy started (loss of feeling in toes and tingling in feet) as well as difficulty swallowing. Fatigue in the afternoons, joints aches and back pain. Brain fog, loss of short-term memory. And the one that really upset me - eyebrows fell out.

    Fingers crossed, I have not had any mouth sores, change in taste or bowel issues so far.

    Throughout chemo I did not follow any special diet, did not drink nearly enough fluids, did not rinse my mouth with salt, did not protect my immune system (took out garbage, cleaned toilets, sprayed weeds, etc), self-medicated with supplements I bought off the internet without a prescription (DCA, B1 vitamin for neuropathy, mega doses of chaga extract for immune system, probiotics) and the worst offence of them all - smoked a pack a day. I don't condone any of this behavior, it's just my normal way of not following instructions and not taking anything seriously.

    From cycle 1 to 4 my CA125 dropped from 1083 to 18 and CT showed "significant tumor shrinkage", ascites disappeared, and I had perfect blood counts.

    To summarize: I believe that chemo effects are cummulative and that everyone reacts differently. Don't be scared of the worst case scenario. Too much negative information causes anxiety and some symptoms may be psychosomatic. Survival rate, progression-free rate are averages, that may be significant to the population as a whole but totally meaningless to predict one individual's outcome.

    Best of luck to you Cathy
  • kimberly sue 63
    kimberly sue 63 Member Posts: 421 Member
    #26
    Cathy,
    I'm doing chemo
    Cathy,

    I'm doing chemo dense the same chemo and same regime you are starting. I have five chemo days left(but it is taking more than five weeks to get through). It was pretty good with chemo every week in the first few weeks, then I started having trouble keeping my blood counts up, so I had to start neupogen (boosts the bone marrow to increase white blood cells) shots. They have helped, but I notice after a carbo/taxol week now, even with neupogen, I can't usually have chemo the next week due to low blood counts. I typically have to get a blood transfusion every 4-5 weeks due to low hemoglobulin. This is what has been typical for me. Things may be different for you.

    Fatigue was a problem with on going chemo. I take a nap every afternoon. I did start walking about six weeks ago and I think it has cut my fatigue in half. So remember good diet and get some daily exercise.

    Through all of it, the physical aspects of chemo have been ok for me. I also have worked every am as a nurse practitioner seeing patients. I think this helped me mentally get through these many weeks. Working took my mind off myself. The most challenging for me was the whole emotional roller coaster I have been on. Some days I feel emotionally stable and I can handle anything and I feel positive about where I am at with the cancer and can deal with it. Other days, I'm lost and totally emotional and worry about all that ovarian cancer means (it is usually worse when my hemoglobulin is low). I am sure all of us have felt this way and it is part of accepting the changes that we all have had to deal with. So I hope you have a great significant other who you can lean on through the ups and downs. Don't forget to accept help during this time and most importantly ask for help when you need it. Hope this helps Kim

Discussion Boards