A little bit of my info and lots of thank you's!!

plh4gail
plh4gail Member Posts: 1,238
Okay my friends, where do I start?

Today I had my #6 Folfox of 12. I am halfway through. Yay! My counts are all a little lower, but not low enough to delay.

I am having all these crazy and annoying symptoms with the Oxy. Usually the first few days after chemo I am the most tired and nausea. But it seems with the last couple, those side effects lingered and I get worn out by evening and take my nausea meds everyday for the two weeks.

And jeesh...the Oxy!! I have the finger tingles like everyone says, and my hands cramp up like a claw at times (ew), and my finger nails sometimes hurt if they get cold. My feet are ok thank goodness. But oh man, my mouth!! I THINK ARE MY TEETH GOING TO FALL OUT?? they have this pressure like I hit them on something and feel lose. They are not lose and dont have a pain so to say. Just this annoying pressure that really doesn't go away. ..and of course there is the sharp object feeling in my throat and funny feeling on my tongue.
My hair even hurt the other day. LOL I know it did!!! So freakin weird!!....OH!! and I think my eyes hurt if they get teary. I mean like stinging, burning feel. And I think I remember some of you mentioning this. I just didn't recognize it right away...

Well my hair is thining, but still there. I cut it!! Took some control from the beast and made my own changes.

My appetite is a little less than treatments #1 &2 when I went crazy with food. I want sugar so bad....crave it!! This is mellowing out a little bit thank goodness. I was going crazy with milk and cookies. (bad girl I know)

Now....I have been having another issue. I have not been posting much here. When I first joined, I was so so scared and looked to all of you and received soo much love and support. I had my 2 surgeries, and started chemo. All the while coming here and reading. Well, I began to feel like I didn't have what I needed to offer. I feel like a kindergardner in a High School class at times. There are so many of you with all these great words of wisdom! I feel like I am still learning and don't know what to say at times, except my feelings. There are so many new people with the same fears I and we all have and it breaks my heart! I see you all come for them and hold them and support them and it's like the angels are wrapping their wings of comfort around them! I want to do that, but it makes me cry. It's so hard. I will get to where I will be brave enough once again, I just feel very inadequate with what I have to offer at times. I am sorry for that.

Anyway.....I am here, and I am hanging in there, and will to my best to be like the people I so look up to on here :) I want to say thank you, thank you, thank you for all that you have done for me!

Love, hugs and smiles from plh4gail
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Comments

  • Kathleen808
    Kathleen808 Member Posts: 2,342
    Gail
    Gail,
    You, my friend, are a blessing by being you. No one here needs to feel any pressure for anything. We are all tired and we are all struggling but the cool thing is we have each other. I am personally amazed by this. I am amazed that my "cyber friends" are such incredible people who have helped me in the midst of the most difficult thing in my life. Gail, all you need to bring to this group is yourself. We care about you and we are here for you.

    Aloha,
    Kathleen
  • Love2Cats
    Love2Cats Member Posts: 127
    Your post helped this rookie
    Hello,

    Now I am am one of the new kids in town, and you are one of the elders. I am hooked up to my black box right now. This is only my second chemo.

    You gave me some valuable insight. I was wondering about why I was so hungry after the last chemo. Also, I have begun to notice a tremble in my left hand when I hold things. You mentioned something with your hand, so I suppose this is chemo related. I also get the pain when my eyes tear up, and frequently when I read some of the posts here, they make me cry. Mostly it is tears of joy for the wonderful people and support that they give to others, people like you.

    I am so glad I found this site. Thanks to everyone who makes this a wonderful resource for us all.

    Sandy
  • jararno
    jararno Member Posts: 186
    Normal Reactions
    Hi Sweetie!

    These are all normal reactions. Make sure your ONC knows about them as my ONC lowered my doasges a bit due to the hands feeling like claws! I had forgotten about the weird jaw feelings and the eye pain!

    I also remember odd food cravings at first and then struggling to eat. ( I managed to make up the lost calories on my off weeks! )

    We are all rookies when it comes to this disease....we are just all in different stages of this journey. Everyone has something to offer so never feel like you aren't contributing even if it is just a good wish for someone or another question!

    It is hard to read all the fears and worries, but then we know we are not alone. When you feel that nobody understands....we do.

    You have made it through 6 treatments. 6 More! Yea! You can do it!

    Hope to see your smiling face around here often!

    Try to Breathe!

    Have a Great Day!

    Take Care,

    Barb
  • jararno
    jararno Member Posts: 186
    Love2Cats said:

    Your post helped this rookie
    Hello,

    Now I am am one of the new kids in town, and you are one of the elders. I am hooked up to my black box right now. This is only my second chemo.

    You gave me some valuable insight. I was wondering about why I was so hungry after the last chemo. Also, I have begun to notice a tremble in my left hand when I hold things. You mentioned something with your hand, so I suppose this is chemo related. I also get the pain when my eyes tear up, and frequently when I read some of the posts here, they make me cry. Mostly it is tears of joy for the wonderful people and support that they give to others, people like you.

    I am so glad I found this site. Thanks to everyone who makes this a wonderful resource for us all.

    Sandy

    Sandy
    Hi!

    I craved hot dogs really badly after my first treatment! I wanted one so badly that I almost woke my husband up to go out and get one in the middle of the night! ( I knew he wouldn't do it so I never asked! ) I became very ill and couldn't eat many times, but I seemed to make up for it on my off weeks!

    If your hands start to bother you too much you should let your ONC know as I had to have my
    Chemo dosage lowered to lessen the side effects.

    The box is annoying to haul around, but you get used to it. My worst problem was remembering to take "Grace" ( I named it ) along with me when I moved around. I did seem to feel the worst after my box was disconnected. Luckily for me I had nothing I had to do except sleep, relax and get through it all. I made it through all 12 rounds despite being the biggest medical chicken around! You will do fine!

    Hope you are feeling good! Have a great day!

    Take Care,

    Barb
  • pepebcn
    pepebcn Member Posts: 6,331
    jararno said:

    Normal Reactions
    Hi Sweetie!

    These are all normal reactions. Make sure your ONC knows about them as my ONC lowered my doasges a bit due to the hands feeling like claws! I had forgotten about the weird jaw feelings and the eye pain!

    I also remember odd food cravings at first and then struggling to eat. ( I managed to make up the lost calories on my off weeks! )

    We are all rookies when it comes to this disease....we are just all in different stages of this journey. Everyone has something to offer so never feel like you aren't contributing even if it is just a good wish for someone or another question!

    It is hard to read all the fears and worries, but then we know we are not alone. When you feel that nobody understands....we do.

    You have made it through 6 treatments. 6 More! Yea! You can do it!

    Hope to see your smiling face around here often!

    Try to Breathe!

    Have a Great Day!

    Take Care,

    Barb

    Gail your mere presence here is enought
    for us, keep posting , there are lots of things you can contribute to the board!
    Hugs.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    pepebcn said:

    Gail your mere presence here is enought
    for us, keep posting , there are lots of things you can contribute to the board!
    Hugs.

    i am a copycat
    just like pepe said, i could not agree more.
    why reinvent the wheel.
    i miss the folfox express posting we had a few months ago.

    gail your a wonderful girl and i hope we both get to 12 but my next goal is just 9.

    my onc said the tail end of folfox is where the fun starts. she was not smiling.

    this thought freaked me out, because my newly numb and not numb feet are unnerving (get the joke )

    no pressure here, but i did feel that you missing.

    even though we are all over the world we are a very special group, and you my dear have more to offer than you know. especially to the newly diagnosed, like me as well, and lori rather all our 1000 plus post survivors who cannot remember the first folfox. hell i still hurt if i cough.

    and its the newly diahnosed i know that breaks our hearts because we know the journey so far. enough said.

    love pete
  • johnnybegood
    johnnybegood Member Posts: 1,117
    pepebcn said:

    Gail your mere presence here is enought
    for us, keep posting , there are lots of things you can contribute to the board!
    Hugs.

    hi gail
    this is why i love this place so much because there is actually someone out there with similar feelings as myself.i went thru all you are going thru with the chemo back in 2009.i had every nasty side effect there was.today i have learned to live with the neuropathy in my fingers and feet yes it has permently damaged me.and my teeth, my gums still feel that pressure and sometimes when i take the first bite of something that hurting in my jaw starts but it is not as severe.i too feel like you when it comes to being supportive on this board.i had a really hard time with my chemo and couldnt really be supportive of others.i went off the board for a while in jan.2010 just to get away from all the cancer and the new people coming here.it broke my heart to see so many new ones.i still did lurke every once in a while because yes i did miss my peeps.and now look 2 weeks ago i was just dx with recurrance 2 mets to liver and one possibly two in my lung so my new plan is to see a different chemo onc and start again.and look where i am turning to,the people on this board.dont feel like you have nothing to give here because we all need eachother...Godbless...johnnybegood(debra)
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    pepebcn said:

    Gail your mere presence here is enought
    for us, keep posting , there are lots of things you can contribute to the board!
    Hugs.

    i am a copycat
    just like pepe said, i could not agree more.
    why reinvent the wheel.
    i miss the folfox express posting we had a few months ago.

    gail your a wonderful girl and i hope we both get to 12 but my next goal is just 9.

    my onc said the tail end of folfox is where the fun starts. she was not smiling.

    this thought freaked me out, because my newly numb and not numb feet are unnerving (get the joke ). at my friend carols wake, she drunk friend stood on my feet. i was smiling, she looked down and apologised. "i just said i felt nothing" then i mentioned folfox.

    no pressure here, but i did feel that you missing. so keep posting if you want.

    even though we are all over the world we are a very special group, and you my dear have more to offer than you know. especially to the newly diagnosed, like me as well, and lori rather all our 1000 plus post survivors who cannot remember the first folfox. hell i still hurt if i cough.

    and its the newly diahnosed i know that breaks our hearts because we know the journey so far. enough said.

    love pete
  • goodwitch
    goodwitch Member Posts: 12

    hi gail
    this is why i love this place so much because there is actually someone out there with similar feelings as myself.i went thru all you are going thru with the chemo back in 2009.i had every nasty side effect there was.today i have learned to live with the neuropathy in my fingers and feet yes it has permently damaged me.and my teeth, my gums still feel that pressure and sometimes when i take the first bite of something that hurting in my jaw starts but it is not as severe.i too feel like you when it comes to being supportive on this board.i had a really hard time with my chemo and couldnt really be supportive of others.i went off the board for a while in jan.2010 just to get away from all the cancer and the new people coming here.it broke my heart to see so many new ones.i still did lurke every once in a while because yes i did miss my peeps.and now look 2 weeks ago i was just dx with recurrance 2 mets to liver and one possibly two in my lung so my new plan is to see a different chemo onc and start again.and look where i am turning to,the people on this board.dont feel like you have nothing to give here because we all need eachother...Godbless...johnnybegood(debra)

    nothing to offer?
    you are kidding right, I do not post much, stage 1, clear scans at 1 year nothing like anyone here has gone through, but you are right in there, living the beast on a daily basis, I read every post, how do you think the wise oldtimers got to be that way? Keep reading, post when you feel a need, what we all get from this board is a sense of belonging in a club , where although the dues can be mighty high, the rewards are great
    feel better soon,
    Glenda
  • Sonia32
    Sonia32 Member Posts: 1,071
    Gail
    You contribute without knowing, your photo makes me smile. You stick around girl and contribute when you feel up to it. Hugs Sonia, who still doesn't know if anything she contributes is worth anything, but just glad to be around her second family!
  • abrub
    abrub Member Posts: 2,174 Member
    We've all been newbies in the cancer world
    And we all learn from each other. Every individual's experience gives us a little more understanding about ourselves. Even we "HS Seniors" learn from the Kindergarteners.

    Yes, it feels good to be able to give back. However, we all had to start by taking, absorbing information and understanding from people who truly KNOW what we are going through.

    Congrats on getting through 6 so far. I only made it through 7 rounds, but there was a great deal of uncertainty regarding the potential efficacy for my cancer (mucinous adenocarcinoma of the appendix) and I decided the known side effects weren't worth the doubtful benefits in my case. Each of us is different, sees the world differently, and has different needs, both medical and emotional.

    Come in for support whenever you need it. Know that even those posts provide support for someone else who hasn't posted similar feelings.

    Many hugs,

    Alice
  • plh4gail
    plh4gail Member Posts: 1,238
    wow
    Wow :) this was a wonderful thing to wake up to! I have always known you are all the best of the best, it was just me struggling with supporting others. But, okay, I hear you and will remember your words and love support!

    Actually I wrote this post to update and whine about my chemo symptoms. The emotions just kind of slipped in as a BTW, I've been quiet thing. Thank you for bringing it to the front and bringing my spirits up about it!

    Love and hugs, Gail
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    plh4gail said:

    wow
    Wow :) this was a wonderful thing to wake up to! I have always known you are all the best of the best, it was just me struggling with supporting others. But, okay, I hear you and will remember your words and love support!

    Actually I wrote this post to update and whine about my chemo symptoms. The emotions just kind of slipped in as a BTW, I've been quiet thing. Thank you for bringing it to the front and bringing my spirits up about it!

    Love and hugs, Gail

    Dear Gail
    Each of us brings something different to the group, but each part is important to the whole.

    It is not how much one says, but by just showing up and giving a few words of support we can show our compassion for others.

    New or vetran, young or old, no matter from what part of the world, we are here for each other.

    Hugs,

    Marie who loves kitties
  • iluvmms
    iluvmms Member Posts: 134
    plh4gail said:

    wow
    Wow :) this was a wonderful thing to wake up to! I have always known you are all the best of the best, it was just me struggling with supporting others. But, okay, I hear you and will remember your words and love support!

    Actually I wrote this post to update and whine about my chemo symptoms. The emotions just kind of slipped in as a BTW, I've been quiet thing. Thank you for bringing it to the front and bringing my spirits up about it!

    Love and hugs, Gail

    hey
    I did 12 rounds of the chemo with oxy, and about 3/4 through I ask about adding mag sulfate and calcium drip before and after treatment (per advice of Craig and others), my Onc added it and it really helped. Ask about it. It helps with the fingers and mouth. I think the eye pain is there until u finish treatment. Do you get the "first bite syndrome" too?
    I made it through all twelve treatments by reading the questions and comments on this site. It is very valuable info from first hand sources. I was dx stage 4, not operable, then became operable after theraspheres, had liver resection, then more chemo, now 9 months clear scans, getting port out on next friday.
  • plh4gail
    plh4gail Member Posts: 1,238
    iluvmms said:

    hey
    I did 12 rounds of the chemo with oxy, and about 3/4 through I ask about adding mag sulfate and calcium drip before and after treatment (per advice of Craig and others), my Onc added it and it really helped. Ask about it. It helps with the fingers and mouth. I think the eye pain is there until u finish treatment. Do you get the "first bite syndrome" too?
    I made it through all twelve treatments by reading the questions and comments on this site. It is very valuable info from first hand sources. I was dx stage 4, not operable, then became operable after theraspheres, had liver resection, then more chemo, now 9 months clear scans, getting port out on next friday.

    iluvmms
    I do get the mag and calcium and I think that is why I feel treatments are tolerabale, just annoying. LOL. Is what you call first bite syndrome what I call teeth pressure? I'm afraid one day they are going to fall out! They aren't lose though.

    Congrats on the clear scans! I can't wait for mine :)

    Gail
  • abrub
    abrub Member Posts: 2,174 Member
    plh4gail said:

    iluvmms
    I do get the mag and calcium and I think that is why I feel treatments are tolerabale, just annoying. LOL. Is what you call first bite syndrome what I call teeth pressure? I'm afraid one day they are going to fall out! They aren't lose though.

    Congrats on the clear scans! I can't wait for mine :)

    Gail

    First Bite Syndrome
    is a blinding shot of pain in the jaw on the first bite of food. It subsides and subsequent bites are okay. You'd know it if you have it! (Boy, did it shock the daylights out of me - doubled over in pain for 40 seconds - yes, I timed it - on the first bite of anything, even a single tapioca pearl.) After not eating for 15 minutes, my "first-bite clock" was re-set, and I'd have to endure it again. It's a form of Trigeminal Neuralgia.

    I'm glad that's done with!
  • coloCan
    coloCan Member Posts: 1,944 Member
    abrub said:

    First Bite Syndrome
    is a blinding shot of pain in the jaw on the first bite of food. It subsides and subsequent bites are okay. You'd know it if you have it! (Boy, did it shock the daylights out of me - doubled over in pain for 40 seconds - yes, I timed it - on the first bite of anything, even a single tapioca pearl.) After not eating for 15 minutes, my "first-bite clock" was re-set, and I'd have to endure it again. It's a form of Trigeminal Neuralgia.

    I'm glad that's done with!

    "The first bite is the deepest" to paraphrase Rod Stewart
    but if you deal with the feeling you get for two seconds and then continue chewing, that feeling will go away. when I drank my room temp/warm liquids, i would try to aim it down the middle of my mouth/tongue to avoid its touching the backsides of my mouth.....This effect stops when the oxi does so you know its not forever......
  • sasjourney
    sasjourney Member Posts: 395
    We all understand!
    Gail,

    It was such a thrill to meet you, Raquel and Lisa (I had met once before) last week. Just to know there are other people going through this that I can relate to really helps me so much emotionally. This can be a very lonely disease and it is so easy to get depressed about it all. I don't post much either because sometimes it is so exhausting to think about cancer so much and I don't always know what to say. I feel so heartbroken that anyone has to go through this. I wish I could make everyone well and do something to ease each persons pain. I am sorry that you are having those problems with oxy...I had a lot of them, too. You are already halfway done and you can make it!!! You are in my prayers.

    Hugs,
    Sara
  • soccermom13
    soccermom13 Member Posts: 224
    you are amazing!
    I did not post until after I was finished with chemo and wish that I had done so. I only made it 2 1/2 round of the pill Oxi. The other 5 rounds were Folfiri (I think - memory is still an issue so I would have to find the paperwork first!) It hurt my eyes so bad that I could hardly open them at times, it even gave me "an out of body" experience! Sitting on the couch with eyes closed because it hurt to open them, I could "see" everyone and what they were doing but could not respond. Literally could not coordinate thoughts with speech. The hands and the bitting, sharp knife in the throat were my issue. It was so horrible! And then thru a scheduling error I thought I was done, they were saying last one and I said no, I mentally could not go thru it. Each one made me more ill than the last. I wish that I had had the support of all the old timers then! Now I feel as though I don't have too much to contribute except prayers. Just old feelings of inadequacy I guess. So keep posting because you touch me!
    Hugs
    Shanna
  • Lori-S
    Lori-S Member Posts: 1,277
    Gail, My Buddy
    You have been such a valuable asset to me and I'm sure others here on the board. Don't ever feel inadequate. We are so lucky to have you here with us. I wish I had less experience to offer ... LOL. Just being here as support is a wonderful gift you give to the "family".

    I can totally relate to all the weird "little side effects" that go on with FOLFOX. I used to just mutter "damn chemo" under my breath when a new one would appear. I used to say "My teeth hurt" and then just stop and shake my head. The teeth hurting and "First Bite Syndrome" are 2 different things. That jaw pain is almost unbearable. I had both teeth and jaw. The jaw pain is only on taking first bites of food. OUCH. Truth is it seemed that if I broke it down, everything seemed to hurt. Boy am I happy to be out of the FOLFOX loop. You are half way through already! Hang in there, you are doing great. I'm so proud of you. HUGS -