Advice for Linda

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lindachris
lindachris Member Posts: 173
edited March 2014 in Ovarian Cancer #1
Having just read the heart-rending testimonies to Saundra from her husband Joe, and thinking about Bonnie, too, and further the post just recently on a 12 year survivor journey...want you all to know how much appreciated your encouragement has been to Linda and I during the last 5 years.

I'm writing today for some specific advice. Linda is in the middle of Round IV on Cisplatin and Taxotere. Her CA125 is 5 and we get a CT Scan next week to see if the tumor is going going gone.

But she's having tremendous difficulty with a couple side effects that get her down emotionally. First is constant tearing of the eyes. They told her this would happen so it's no surprise, but has anyone heard or done anything that helps with this?

Secondly, the burning in her mouth/tongue makes it very difficult to eat. What remedies have you heard or done for that?

Any perspectives would be helpful. Thanks.

She's a tough girl but everyone has their limits. So we're shooting for the prescribed 6 rounds and secretly I'm thinking 5 may be the max if she's too tired (her counts are dropping) and sick/fatigued (that Cisplatin is a kick in the arse) and side effects and all. So I'm trying to strategize to find helpful hints to help her through.

Chris

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  • mopar
    mopar Member Posts: 1,972 Member
    #2
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    HOPE THIS HELPS
    Dear Chris & Linda:
    I didn't realize that the eye-tearing is a side affect of the chemo, at least I don't remember if I had actually heard that. I still have eye-tearing to this day (only on one side, and I don't know if it's related). But I'm sorry I can't give any feedback or suggestions on that part of your question. No doubt it is annoying.

    What I can also relate to is the horrendous oral problems - sores, burning, no taste, swelling of tongue, etc., etc. My toungue always looked like a road map! We bought a snow cone machine, froze some non-citrus juices, or any other beverage such as iced tea. Then put it in the machine and I let the ice shavings melt in my mouth. It was tasty, and it also took away the burning for a bit so I could eat something. Aside from that I would stay away from highly acidic and seasoned foods which can make the burning feel worse.

    I sure hope this helps. If I think of anything else I'll add later. That CA125 number is tremendous! Please tell Linda my prayers continue and to hang in there. If she can finish the last rounds that would be great. Whatever she can handle.

    God's Blessings!
    Monika
  • MK_4Dani
    MK_4Dani Member Posts: 314
    #3
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    There have been lots of posts about mouth sores on this board. If you put "mouth sores" in the search field many archived posts will pop up. Taking L-lysine has helped others, (with doc ok) and there is a special mouth wash available by RX..I forget the name but the ONC nurses will know. Also OTC Biotin may help.

    Tell Linda to hang in there, fight, fight, fight!
    Good Luck,
    Mary
  • hopeful girl 1
    hopeful girl 1 Member Posts: 454
    #4
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    MK_4Dani said:

    Search
    There have been lots of posts about mouth sores on this board. If you put "mouth sores" in the search field many archived posts will pop up. Taking L-lysine has helped others, (with doc ok) and there is a special mouth wash available by RX..I forget the name but the ONC nurses will know. Also OTC Biotin may help.

    Tell Linda to hang in there, fight, fight, fight!
    Good Luck,
    Mary

    Biotene
    I just finished treatment for uterine 3C-taxol/carbo, and had my last (6th) treatment on Nov 2nd. They lowered the carbo dosage on my last two chemos. That helped for the 5th chemo, so it was unexpected that my counts would drop so low the 6th chemo. My bloodcounts are still very low. They are watching my platelets which are at 21,000 per last test on Wednesday. I go again on Monday for bloodtest, if they hit 10,000 I will need a platelet transfusion. Alittle less than 2 weeks ago I had a hemoglobin transfusion-so now that number looks quite a bit better. WBC and neutrophils still low too. My oncologist feels the numbers will start to recover soon.

    I used and still use Biotene mouthrinse and toothpaste. I would ask the oncologist's nurse about it-maybe it would help. I rinse my mouth with it for about 30 seconds, numerous times per day.

    Happy Thanksgiving week-end.

    Hugs and healing.

    Cindy
  • kayandok
    kayandok Member Posts: 1,202 Member
    #5
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    Dear Chris,
    5 is an awesome number!!! I had the cis/gem 2 years ago for 6 cycles, and can identify with the side effects srtuggle.

    1. The tearing can be dry eye, which I think can be brought on by chemo, or just old age, in my case. I got some liquid tears and the tearing has stopped. Not having eye lashes also allows specs of dust to come into your eyes that would not make it there with the lashes. They really do have a function!

    2. I got very bad mouth sores with the doxil and used IMPACT, a liquid drink used a few days before infusion, and never had any problems after that. If mouth sores are mild, L-lysine is really helps too. Some people take it regularly when on chemo.

    3. I found that all on the chemo, the cumulative effects where physical and mental fatigue. I gutted it out every time, and as the chemo washed out of my system, I felt more and more myself. I did read a study, that connected platinum with depression, and it made sense to me, looking back on how I felt on the cisplatin, especially. But, bottom line is that when you are physically weak, you do get down. I dont have any suggestions other than, to not expect anything of yourself, other than the bare minimum, and do things that lift your spirit! That could be a walk in the park, playing a game with your kids, or having the energy to cook a meal. For me, it was all of the above.

    You are a wonderful husband to try and be proactive with helping your wife throught the chemo. I know that I could not have made it without my husband's support and encouragement. He just kept saying, "We are going to make it, let's just do what we have to do today. Tomorrow it is going to be better! Just rest, I'll take care of it. You are going to be fine, I know it!" to name a few things that were a part of his daily words to me that kept me going.

    Many blessings to you and Linda today,
    kathleen
  • lindachris
    lindachris Member Posts: 173
    #6
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    kayandok said:

    Dear Chris,
    5 is an awesome number!!! I had the cis/gem 2 years ago for 6 cycles, and can identify with the side effects srtuggle.

    1. The tearing can be dry eye, which I think can be brought on by chemo, or just old age, in my case. I got some liquid tears and the tearing has stopped. Not having eye lashes also allows specs of dust to come into your eyes that would not make it there with the lashes. They really do have a function!

    2. I got very bad mouth sores with the doxil and used IMPACT, a liquid drink used a few days before infusion, and never had any problems after that. If mouth sores are mild, L-lysine is really helps too. Some people take it regularly when on chemo.

    3. I found that all on the chemo, the cumulative effects where physical and mental fatigue. I gutted it out every time, and as the chemo washed out of my system, I felt more and more myself. I did read a study, that connected platinum with depression, and it made sense to me, looking back on how I felt on the cisplatin, especially. But, bottom line is that when you are physically weak, you do get down. I dont have any suggestions other than, to not expect anything of yourself, other than the bare minimum, and do things that lift your spirit! That could be a walk in the park, playing a game with your kids, or having the energy to cook a meal. For me, it was all of the above.

    You are a wonderful husband to try and be proactive with helping your wife throught the chemo. I know that I could not have made it without my husband's support and encouragement. He just kept saying, "We are going to make it, let's just do what we have to do today. Tomorrow it is going to be better! Just rest, I'll take care of it. You are going to be fine, I know it!" to name a few things that were a part of his daily words to me that kept me going.

    Many blessings to you and Linda today,
    kathleen

    Thanks everyone
    I'll read these back to Linda tomorrow. We just got done watching Date Night with Steve Carrell and Tina Fey. I liked it. Linda was bored. Ha ha. Married life.

    I think the hardest part is when I try to help her and she refuses to work with me. For instance she has a light cold and it's running down into her chest. I quietly suggested a decongestant and she's ignored me all day and still complaining about the effects. The echo chamber.

    But as you said, tomorrow's another day. I did get her out for a block walk with the dog this afternoon. The wind was howling but she wore her long North Face coat and got home snuggly enough. The dog thought she was a tree though. Had to pull him away. Ha ha. Just kidding.

    Hasta luego.

    Chris
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