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Brought this to the top for Carol....she needs our support.

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

April 24, 2012 - 10:03am

Today the onocologist begins.
new
All of my stuff has gotten here from MD Anderson and I will find out what they are going to do to me here for treatment. Sounded gruesome when they spoke of it in Houston. I am battling a rotten bladder infection on top of it all. I feel like throwing in the towel. I am so sick already. I am not going to cry when I get there but it makes me wonder if the treatment kills you too after seeing the post on Dad Passed Away. Soooooooo sorry. I need encouragement. All I feel is fear! Help. cbpgill26

Hi Carol,
I hope you don't mind me bringing your post to the top of discussion, but I was worried it might not get knowticed as well in the other thred. Today is a very scary day for you and I felt you need all of the comfort and feedback we can muster up. Please Carol...try to stay calm and not get too far ahead in your thoughts. There are so many variables to take into account with the various sub-types of Lymphoma. I've been here for almost 2 years now and so far nobody in our group has died from treatment. Age, health and how aggresive the cancer type is, has alot to do with the outcome of treatment. One size doesn't fit all and each one of us is unique. I know how scary this is for you, but I'm sure you are going to be ok and get through this. Let us know what your treatment consists of once you find out, and we will all get back to you with what we know. It's going to be ok. My prayers are with you...Much love...Sue (FNHL-2-3A-6/10)

jimwins's picture
jimwins
Posts: 2109
Joined: Aug 2011

Hi Carol,

I sent you an email around 2:30pm today in response
to your post/request earlier today :).

Sue is giving good advice/information.
We are here for you. The hardest thing is getting
started and the "not knowing". Once you've been through
a couple treatments, you'll know more what to expect.

Big hugs to you,

Jim

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Carol,
We are all here for you. We all know what you are going thru. You will be fine as you will see at the finish of the treatments. It is a rough road,but you will do well. John

anliperez915's picture
anliperez915
Posts: 770
Joined: Sep 2011

Hi Carol,
I just wanted to say that you will be fine Carol, you just have to have faith in God, the Dr's, and the medicine. It's very scary at the beginning and to the unknown but just stay calm like Sue said and be strong and you will be fine OK Sweetie. I'm sending you a (((HUGE HUG)))

Sincerely,
Liz

cbpgill26
Posts: 68
Joined: Mar 2012

Liz I felt your hug. I needed it. Thank You so much. How do I put you on my friends list for private messages? I am computer illiterate. Tomorrow first chemo day. OMG.

forme's picture
forme
Posts: 1161
Joined: Aug 2010

Hi Carol,

I posted to you under the thread " anyone hear from Carol"

Hope you are feeling a little less stressed this evening.

Hope to talk to you later. I have had a terriable time getting on the site the last few days.

Take care, Lisha

cbpgill26
Posts: 68
Joined: Mar 2012

Lisha so glad to hear from you. I need some private post information. I have not a clue how to send private messages. By some fluke I got jimwins on it now can't figure it out. Your picture is lovely. I don't know how to upload stuff. Chemo tomorrow OMG. First day out.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Carol,
Try to remember we do not know other problems and illnesses that people may have. Some are battling other problems we know nothing about.Lymphoma is just one of them. I have read somewhere that in most cases Lymphoma sufferers die from things other than Lymphoma.Yes,you are right about the chemo. It is a poison to all cells to our system,but the body can overcome it and produce new replacement good cells in time. John John

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Carol,
Try to remember we do not know other problems and illnesses that people may have. Some are battling other problems we know nothing about.Lymphoma is just one of them. I have read somewhere that in most cases Lymphoma sufferers die from things other than Lymphoma.Yes,you are right about the chemo. It is a poison to all cells to our system,but the body can overcome it and produce new replacement good cells in time. John

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Carol,
Try to remember we do not know other problems and illnesses that people may have. Some are battling other problems we know nothing about.Lymphoma is just one of them. I have read somewhere that in most cases Lymphoma sufferers die from things other than Lymphoma.Yes,you are right about the chemo. It is a poison to all cells to our system,but the body can overcome it and produce new replacement good cells in time. John

jimwins's picture
jimwins
Posts: 2109
Joined: Aug 2011

I got an email from Carol at 9:43 this morning.
I responded with a clickable link to this posting.

Today: MUGA scan (heart)
Friday: Port
Chemo begins Mon. Tues. 6 hr drip Mon. 4hr drip Tues.

She's anxious/afraid and I'll let her hopefully add more to this post.

Hugs,

Jim

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Carol,
Everyone gets the slow drip at first. They have to make sure your body does not have any reaction. I had a reaction myself of burning in the nose,so they had to slow it down for a few minutes more. After the body got accustomed they speeded it back up, but still took 6/7 hours to finish. John(FNHL-1-4A-5/10)

cbpgill26
Posts: 68
Joined: Mar 2012

What will I do for six hours? Freak out? OMG. You are all so brave.

jimwins's picture
jimwins
Posts: 2109
Joined: Aug 2011

Also, in my email to Carol I suggested she use
the boards as much as possible as individuals (like me) may
not always be around to check mail, etc.

I explained the posts on the board are public and to
not share anything she wouldn't want the world to know, etc.

Thanks

Jim

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Well I guess that leaves Facebook out,Huh? LOL
Just trying to keep it at the top.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Keep us updated. John

jimwins's picture
jimwins
Posts: 2109
Joined: Aug 2011

Bumping this up. Carol emailed me recently.
and has commented on another post recently.

Jim

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Carol,
Just wanted to drop in and tell you I'm thinking about you. I read Jims list of procedure dates and looks like today is "Port" surgery for you. Hope all goes well. I haven't had any problems with my port since day one. I was a little bit sore for the first week, but from then on, all has been good with it. Take care Carol and let us know how you are doing. Much love...Sue (FNHL-2-3a-6/10)

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Carol,
I guess you are tired right about now. Don't forget to name your new little friend. It will feel like a swollen lump for a few days and then as it heals you will notice the 3 little bumps on top. These are there so the nurse knows exactly where to put the needle for your infusion.It will feel strange at first but will make things a lot easier for you when you go for the infusions. I guess you are an official member of the club now. LOL. You will be fine. John

DWS49
Posts: 3
Joined: Apr 2012

I am hoping you will take time to calm your thoughts. Tackle each day as it comes. Don't try and imagine what may be, but imagine what you can do now, this day, to face the issues you need to attend to.

I had follicular and diffuse Large B cell non-hodgkins diagnosed in 2002. Since my treatments with CHOP and Retuxin I have beeen in remission and cancer free. There is always hope.

jimwins's picture
jimwins
Posts: 2109
Joined: Aug 2011

Congratulations DWS49 and thank you for giving me hope too ;).
If you've gone more than 5 years I believe it's considered CURED !

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Jim,
Clicked on and saw the new pic and wondered who that was !!! LOL What was the last one you had on here. I saw it so much I can't remember which one it was. LOL John

jimwins's picture
jimwins
Posts: 2109
Joined: Aug 2011

Hi John,

I took that picture this morning. I hope I don't look
too serious. I've been meaning to update my picture for awhile.
I'd posted various pics of my sister for awhile and the very last
photo was of me from a few years ago before the cancer.

So, my hair has grown back somewhat and is darker than before.
The nice thing is I have less gray than I did before but I don't
recommend chemo as an "anti-graying" regimen ;).

Jim

cbpgill26
Posts: 68
Joined: Mar 2012

I pray cured.

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi DWS49,
Thank you so much for sharing your great response to treatment and how long you have been in remission. It truely gives those of us in our first few years of dealing with our own cancer, a good feeling and added hope that all is going to be ok. May I ask how long you were on Rituxan?...was it a 2 year maint?...and did you have any other form of treatment during this long remission time??? My Rituxan maint will end in Feb 2013 and then I will be doing "watchful waiting"...which kind of scares me, because there is always the possibility my Lymphoma will have a recurrance. This may sound silly, but I'm comforted knowing the Rituxan is in me attacking the cancer...once I'm off of it, I feel like.."oh my...what will keep my cancer at bay, without it"??. Well, no need to worry about that now, I still have 5 more rounds of Rituxan to go. Once again..."thanks" for sharing.
Best wishes for continued remission. Sue
(FNHL-stage3-grade2-typeA-diagnosed 6/10) age 61

cbpgill26
Posts: 68
Joined: Mar 2012

I was so happy to see your post for me and others. My husband said one day at a time not two. He sounds like you. I am older I see if 49 is your age. I am 68 and that will make this harder to beat I am sure. There is still so much I want to do and was so full of life. Now I am on my knees. I hope I am stronger then I think but I feel so tired. I did breast cancer 8 yrs. ago. Seems easy compared to this. I only had radiation. This chemo. scares the pants off of me. I can't imagine tomorrow the first day of it and 6 hrs. OMG 4 hrs. Tues. to see what reaction I have. And what could that be? Scared to ask. I am having Chops and Retuxin too but my age concerns me greatly you guys are babies! I am so thrilled for you DWS stay healthy. I appreciate your post so much. As I said you are all I have at the end of the day to check in with for sanity. Carol Diffuse Large B Cell Lymphoma found in corner of my eye small mass March 2012. May try to eat a brownie and stay off of the phone. As I posted a lady called and said yep, her mom went right back into CA after remission and died. OMGosh I wanted to throw the phone at the wall. Not what I wanted to hear..........! Think she was so glad it wasn't her. Well, me too! I wouldn't wish this on anyone. Nite to all.

cbpgill26
Posts: 68
Joined: Mar 2012

Port is so sore today. Bad nites rest. Glad that is behind me. Just got a phone call from a friend who made it clear her moms cancer came back in four mths. after treatment ended for breast cancer it went to her bones. Heck I had that breast cancer 8 yrs. ago. Now this!She went on to tell me how awful her mother's death was. I have been vomiting every since. I have done better somewhat mentally last two days then this kind of a slammer. She cried wanted things to go back to being the same. etc. etc. I nearly hung up. I will not answer the phone again for anyone but one special friend and close family. I did not need to hear this from her today of all days or any day. I was so elated to see you all out there today. You are all I am hanging onto. I feel blessed to have you. I wish we were all out of the woods forever and well. Shall the sun ever shine again on my face. I swear I wish I had the guts to call it quits myself. I am wracked with agony and fright. I am not as strong as you all are. I am the whimp of the group. I am sorry. Hugs. Diffuse Large B Cell lymphoma noticed first as a lump in the corner of my eye. March of 2012 Stage 1

jimwins's picture
jimwins
Posts: 2109
Joined: Aug 2011

Hey Carol :).

I see you found the post I mentioned in the email! Yay!
You survived radiation treatments and breast cancer so you
are not a whimp :). But you are welcome to be a whimp here ☺.

Diffuse Large B Cell Lymphoma is very treatable and Stage 1 is the
"kindest" stage you can get. I see you read and responded to DWS49
very positive post - good job!

Once you get started with your treatments it will be better and be
less frightening. I was scared to death. They've come such a long way
today in managing treatment and side effects. Like you said, one day at
a time - also, one treatment at a time - just get through each one and before
you know it, you'll be done.

You are welcome here. We care about you and are here to
support you. Now we can't make your hair grow but hopefully we can make
you smile once in awhile.

Hug those baby dogs for me !

Jim

cbpgill26
Posts: 68
Joined: Mar 2012

Found out yesterday it is Stage 2A whatever does the A mean I hope earliest in beginning. I was shocked. Some day I will figure out how to post a picture. Then you will all probably leave me. Ha Ha. Your new picture looks wonderful and as a dog lover I love your baby Jim. Hugs.

cbpgill26
Posts: 68
Joined: Mar 2012

Sue, how do I put you on my friends list? I managed to do jimwins then havn't a clue. Thanks for putting me up first. I am so grateful. xxxxxooo

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Carol,
I am now on your friends list. On your "About Me" page it shows my name listed as your friend. Next time you log on you will get a knowtice telling you so. When you want to add someone to your friends list, just click on their picture which will take you to their "About Me" page. Then scroll down and where it say's "Friends Action" click add as friend. I hope that makes sense to you. It's hard for me to explain how to do computer actions, as I'm not the brightest crayon in the box when it comes to techie stuff...ha!
On another note from your post about your friend calling....All I can say is "wow"...what lousy timing to tell you about someone passing away! Try to ignore people when they say things like that..I really don't believe they do it on purpose, more because they don't know what to say and then end up saying something stupid...ya know what I mean? I think it's a good idea to stay off the phone for the rest of the evening and just try to do something peaceful and calming. Maybe watch a funny t.v show, or read something light and up-lifting. When I get freaky over things I'll read articles on line that are interesting, but not depressing. I also look at funny video's...such as babies laughing...or animals doing funny stuff. Tomorrow is going to be a long day for you and you will need to be as rested as possible. I think you will probably sleep alot tomorrow while getting your infusion, from the pre-meds they give you. Ask the chemo nurse to ask your doctor about getting a sedative for the day...ativan or something similar. I promise you Carol...it will get better in time. This first go around is very scary, but you will most definetely make it through it. I just don't know what else to tell you, because I remember my first treatment, I felt EXACTLY like your feeling. My doctor had me on Zanax which really chilled me out the night before treatment. Do you have anything at home to take tonight? Well sweetie...I will be praying that peace comes to you tonight, and tomorrow I will be praying for a good day. You hang in there, and as soon as you feel up to it, please tell us how you are doing after treatment. If the steroid keeps you awake this week, just jump on here and we will be ready for you...(I will..forsure). Start a new discussion after treatment..ok? Just look at the top of the page and where it says new discussion.. click.. and write. If you keep adding to this thred it will get too big to follow. Anyways...be peaceful dear lady, and know we are all here for you. Much love to you Carol...Sue

cbpgill26
Posts: 68
Joined: Mar 2012

Dear God it is after two AM and I am bouncing off the walls. Treatment was tiring and so many bags of stuff for this chops. I told the doc. I had vilolent headaches from Prednisone. He said he never heard of that. Well, I told him I hurt so bad I am in bed crying when I take the stuff at only 40mg a day. I see 100mg for five days. OMGosh. He gave me vicodin but I ate one and it could have been a jelly bean. I have slept an hour and up an hour. I am very shaky and having hot flashes. Living with a fan on my face and ice bags. Tomorrow I go for the lunesta shot. Ever had one? Another adventure. Heard Jim say you ache all over. Well, my doc. said the same thing. So off to four days of wild prednisone and aching all over. Then blood check in a week or so to check things. I will have my head shaved this weekend by a friend. Wow, wigs on with all this sweet. Got some light head covers that look awful for home. I am not crying anymore but I have the bathroom issue. NO going at all. I am so full of medicine I feel like a dumping ground or crack house. Metal taste in my mouth and water tastes like it is full of chemicals. This is just round one. Five more to go. I hope they don't get worse. SO FAR NO NAUSEA THANK THE GOOD LORD AND ALL THE MEDICINE I WAS GIVEN FOR IT.I will try to start a new discussion. I am not the brightest bulb in the computer world. This moring it said my password had changed no it didn't took many attemps to get in. But since I was up I had to come here. Your all the best thing that has ever happened tome. Thanks God and Bless You all for being there. I am so grateful for you all. Hope this post gets around. Yep, steroids are wild. I have alwasys had to taper them when on them for asthma. Says it is dangerous not too. Well, no tapering here. Seems Danger is imminent on all this stuff and especially if my A Fib returns. I am so petrified about that as blood thinners have to be given or that deadly stroke. Can't take them when my blood count goes South. Dr. did say I can stay on them till the blood is bad. I sound like a novel for ill health and medical and hyochondiacs. If I could just not worry about it all daily. I did go to Walmoart with my husband for a few meds. today. Good to be out but I was shaky as heck. Sorry this is a book no one does it but me. So be patient I am working on this. I hope other treatments will go well with no more then the trouble I have with the weakness and the MISERABLE HEADACHES. WONDER WHAT THE 100 MG WILL DO TOMORROW? Good morning or nite as it may be. Seems to be endless day for me. LOVE and Hugs. CBP

jimwins's picture
jimwins
Posts: 2109
Joined: Aug 2011

Hi Carol,

I posted some info about my experience with prednisone on
another post you made.

I see you do have a sense of humor in these statements you made:

"OMGosh. He gave me vicodin but I ate one and it could have been a jelly bean."
"I am so full of medicine I feel like a dumping ground or crack house."
"I sound like a novel for ill health and medical and hyochondiacs."

They made me smile and realize you are funny and strong :).

Use your sense of humor when you can and feel up to it, honestly it will help.
I know cause I got pretty crazy myself during all of this and just to
simply laugh took out a lot of the sting.

Shaving your head is a good idea so try to make that fun in someway. Wigs
are not always comfortable so find other things you can wear. Silly hats
are always fun. I wore knit caps alot just to keep me warm. I looked like
"Casper" for a long time without hair, eyelashes and practically no eyebrows.

And of course there was "no hair" in "other" places and that certainly took
me back to pre-puberty :). It certainly was "breezy" in the nether regions ;).
Nice thing was I didn't have to worry about hair cuts or shaving for several months
and I certainly saved money on shaving and hair products.

Give yourself a big hug Carol - I think you're doing great!

Jim

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Carol,
I was in bed when you posted this, but now wish I'd been awake so I could have responded. I spent many long nights awake and did exactly what you did with writing to the group. It sure helped to pass the time, and sometimes I'd catch another "night owl" awake, like Lisha(another lady in our group), and she would calm me down. I only had to take 60mg a day of the prednisone, but many others in the group were on the 100mg. I didn't get the horrible headache, but definetely had massive hot flashes and shaky feeling. I also had flushing in my face causing me to look red faced the whole 5 days while taking it. My face also looked bloated and fat...it's called "moon face". One good thing about the prednisone...you only have to take it for 5 days and then get a rest until your next round...at least thats how it went for me. Hang in there...my prayers and good thoughts are with you!
Much love...Sue (FNHL-2-3A-6/10)

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