CSN Login
Members Online: 6

You are here

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

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

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

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

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's picture
Love2Cats
Posts: 127
Joined: Dec 2010

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's picture
jararno
Posts: 189
Joined: May 2010

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

jararno's picture
jararno
Posts: 189
Joined: May 2010

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

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

for us, keep posting , there are lots of things you can contribute to the board!
Hugs.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

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

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

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

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

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)

goodwitch's picture
goodwitch
Posts: 12
Joined: Aug 2010

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's picture
Sonia32
Posts: 1078
Joined: Mar 2009

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's picture
abrub
Posts: 2149
Joined: Mar 2010

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's picture
plh4gail
Posts: 1238
Joined: Oct 2010

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's picture
Lovekitties
Posts: 3356
Joined: Jan 2010

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's picture
iluvmms
Posts: 134
Joined: Aug 2009

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's picture
plh4gail
Posts: 1238
Joined: Oct 2010

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's picture
abrub
Posts: 2149
Joined: Mar 2010

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
Posts: 1956
Joined: Oct 2009

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
Posts: 395
Joined: Jul 2010

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's picture
soccermom13
Posts: 226
Joined: Feb 2010

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

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

You are doing great, you look wonderful! I do the hand and feet syndrom, and the belly! Lol

Keep doing what you doing and come here and share your experiences for the newbies. We will be here for you. It's all a revolving door, just need to keep it going, so we take care if all the stages!

Big hug! Raquel

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

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 -

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

I think you are wonderful!!! enough said....

Jennie

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

Gail, you're family. Enough said.

Love and Hugs,

Holly

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

i remember our little exchange about how we love rocks. a friend gave me a beautiful polished pink heart stone and told me rocks have good energy and she wanted me to have it. i absolutely love it. but my brother needed it more than me so today i gave it to him, and told him to hold it and feel the energy of the love from his wife and four kids and 4 grandkids. he teared up, as did i, and his wife. rocks are beautiful. and my friend would not mind at all that i gave it away.

i feel i have not much to contribute here and i have a hard time with reading the difficult posts sometimes. but folks here are on my mind lots.

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

You are helping others just by sharing what you shared. I remember wondering when does one become a survivor, is it when you are 1st diagnosed or after you finish all of the treatments? I never had survivor guilt until I managed to still be alive 2 yrs later, because I did not know if I would still be here . It is strange the things that can roll around in your head. Congrats on getting through half of your treatments, you are definitely a survivor in my book!!!

Sometimes you need some space between the fighting of the cancer and being diagnosed to sort of breath, before you can heal and find your voice again.

Good luck with your remaining treatments!!!

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I've so enjoyed having another Gail here! *smiles* Makes me a little mad that you're skinnier and prettier, but I'll forgive you. *grins* Each of us has our own gifts, just like a regular family. So we all bring what be bring, and it makes us a wonderful "whole."

*hugs*
Gail

Subscribe to Comments for "A little bit of my info and lots of thank you's!!"