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Ok...the holidays are over..so...

allmost60's picture
allmost60
Posts: 3176
Joined: Jul 2010

Whats up peeps??? The holidays are over so lets check in and share whats going on. Up-coming tests? How your feeling? etc,etc. I'll go first...my port gets flushed on the 11th...first CT scan on the 18th and results of the scan will be reviewed with my oncologist on the 25th. I'm still pretty tired, but nothing going on with me to really complain about. Cold as heck here in Yakima, but hey...it's winter, so it's to be expected. My daughter-in-law is starting to show and the baby is finally kicking which is always fun to feel. I have nothing but good positive thoughts for the New Year and keep all of you in my daily prayers. Love ya all...Sue (FNHL-2-3A-6/10)

onlytoday's picture
onlytoday
Posts: 596
Joined: Jun 2010

Hi Sue,

I have a follow up with my onc on the 11th. Having infections (that require antibiotics) since my treatment. Still tired and tons of rib pain. Looking forward to the appt to see how my numbers look. Last time my ferritin was very low and my IGM was elevated- hoping both are looking more normal. Looking forward to a New Year and hopefully no treatment for awhile. We're on watchful waiting - no Remission but I'm learning to live with that. The Onc says we're holding it at bay at this point. That's better than the alternative!! :)

How cool for you to have a grandbaby to look forward to.

Love all you guys- and keeping you in my prayers.

Donna MZNHL stage IV 05/10

yesyes2
Posts: 462
Joined: Jul 2009

Hi All,

Okay, what's up for me. Tomorrow I go for an ultra sound on my spleen to see if I'm having a recurrance of my lymphoma. I'm sure hoping it was a fluke on my CT scan and not anything more. If I said I wasn't nervous I'd be lying. I don't know when I get the results, possibly Thursday or Friday if my local onc is around and if not I'm seeing my Hemo/Onc specialist in SF on the 10th and will ask him for the results. I need lots of positive good thoughts and wishes.

Neo, my cat's biopsy was inconclusive on what type of lymphoma he has. A fine needle aspiration was done, apparently they don't do core needle biopsys and the cells looked normal but most likely are immature small cell lymphoma cells. He is back on preds and eating and gaining back some weight. He will start the chemo drug Leukeran either tomorrow or Thursday. I'm keeping all fingers and toes crossed hoping that this works and buys him lots of time. Don't know why they chose this over CHOP, maybe because of the inconclusive results.

I am really sick of dealing with Lymphoma. But am so happy that you both are doing good and had Happy New Years.

Love to all the other peeps,
Leslie

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Ok I go this Thursday to see my onc and get my maintenance. I mentioned on another thread that I am having some pain and swelling around my armpit/breast. It's close to the same vicinity where I had my biopsy last year. I figured since I am 3 months overdue for my mammogram that I would call and schedule it today. The guy asked if I was having any pain and as soon as I said yes he told me I needed to call my doc to have a diagnostic mammogram rather than screening.

So I called my onc's office and left a message explaining the problem and asked if they would call it in for me or if I should wait and talk to Dr. Lee on thursday. She called back this evening and after talking to Dr. Lee, they have scheduled me for the mammogram at 7:30 Thursday morning and we'll have the results when I see him at 9:30.

I know I am tired, can't sleep because everytime I roll over it either hurts or just plain uncomfortable. I'll admit it, I am scared.

Sorry, don't mean to be whining.

Take care,

Beth

Follicular stage 3

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

Beth,
Do not even think you are whining. You are scared and have every right to be. We are all scared and if we would say we are not then we would be liars. I can tell you right now I am nobodys He-Man. Hows that for being blunt? LOL. John(FNHL-1-4A-5/10)

allmost60's picture
allmost60
Posts: 3176
Joined: Jul 2010

I don't have any major complaints right now, but thats not to say I'm not scared. I'm like that duck John refers too...calm on the surface but paddling like hell under the water! Waiting to get my scan and then the results is truely nerve wracking. The waiting is getting on Steve's nerves also. Every other day he says.."geez honey...I sure hope your in remission...wish we knew".

Hey Beth...you have every reason to be scared, so don't think for a minute that anyone feels like your legitimate fear, is whining...it is, what it is...hella scary! Keep us posted.

Leslie and Donna...I'll be thinking good positive thoughts for both of you also.

Question John...Do you know if we have to take prednisone when we do the rituxan maintenance? Geez..I sure hope not!
Love Sue....(FNHL-2-3A-6/10)...hopefully in remission!

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

Sue,
You know I really don't know for sure. I don't think so though. I believe the pred works with the chop and cvp drugs. Mary would know for sure and a few other here on the maintenance. I will be watching to see myself. John (FNHL-1-4A-5/10)

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

I just remembered they said Rituxin is not a chemo drug,but is more of a stabilizer and cell inhibitor type. John

yesyes2
Posts: 462
Joined: Jul 2009

Hi Guys,

You DO NOT take preds with the Rituxan maintenance The only thing I have ever received with the Rituxan maintenance was a Benedryl pill and 2 Tylenal. The doctor did order Benedryl via IV but I declined and took it in pill form. Some doctors do order steroids before the rituxan to ward off any allergic reactions but I always have refused steroids as they give me really terrible headachs. Like you Sue, I took reduced Preds during my RCHOP. I find Rituxan really an easy drug to take and the only hang up is infusions take a long time and Benedryl makes me ever so sleepy.

Hope this helps.
Leslie

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

Leslie,
Thank You,it helps me. I was really starting to wonder about it. I feel better now. john(FNHL-1-4A-5/10)

allmost60's picture
allmost60
Posts: 3176
Joined: Jul 2010

Oh yes Leslie, that tid bit of info REALLY helps me! Thanks!!!..No pred with the rituxan maintenance..YIPPEE! The thought of having to take pred "EVER" again just gives me the chills. I know eventually I will have to take it again, but I'm praying for a good long time span in between! Be sure everyone to check back in when you get your test results or you have any "NEW" news. Got snow again last night and I shoveled it this morning and didn't get too exhausted...sort of, but I went real slow. The fresh air felt so good..(kept the hot flashes at bay)..ha!
Love...Sue..(FNHL-2-3A-6/10)

truckingalong
Posts: 444
Joined: Aug 2010

Thanks, Sue for checking in.

Today, my WBC was found to be the lowest ever so got a shot today. No wonder why I had been feeling flu-like and weak and do feel little scared. I still have 2 more treatments - will this get worse? I went to the mall yesterday to get turtlenecks on sale that I needed badly as I have lost weight again - oops - now I gotta stay away from high risk areas and pray I don't get sick or get systemic infection - wonder what symptoms of that is like...

Also, last 2 weeks, I notice I smell more sensitively and taste differently - I keep smelling something like smoke in my bedroom but there is none so I wonder if the former owners had smoked a lot in this room!! But we had it repainted - oh well... Also, my hubby was shocked when I waited in the car when he went into the store for a min and came back and I identified the smell that came from the store from him. Also, I gagged when someone used bleach cleaner nearby, etc. As for the taste, I don't enjoy eating sweets as much - they are too sweet - as if it is magnified 4 times sweeter. Guess it s the chemo effects. Wonder if anyone has experienced this?

Thanks for listening and with positive thoughts for everyone,
Love,
Liz

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Hey guy's, hope everyone had a great New Year,( as long as we are breathing it's great right!) I have an appointment the 19th for a port flush and check up. I will be having my first PET Scan real soon...... They will mean a lot more then before! I still get tired but other then that I feel pretty good. I wish everyone could get into remission.....Stay srong Vinny

yesyes2
Posts: 462
Joined: Jul 2009

Hey Beth,

I too had hightened sense of smell and taste during both my chemo for lymphoma and breast cancer. The breast cancer chemo was unusually bad for smell. Carrying groceries in the trunk of the car was sometimes so over powering and I couldn't drive by a coffee place because it smelled so bad to me. I could even smell the radiation whe n I received treatment to my breast. For me bland was the word for how I wanted my food to taste and sweet was the only thing I could taste for 2 cycles on my RCHOP. But all went away when chemo ended.

Hope things get better for you. Your treatment sounds especially long and hard.

Sending you healing blessings,
Leslie

truckingalong
Posts: 444
Joined: Aug 2010

Leslie, thanks for the comments so I know my experience is normal, huh! My dad just said it is better to suffer the side effects of chemo and then get well! It helps to talk to him and others and get distracted but wish the last leg of my treatments would be easier. My hubby just bought me Boost to pack me more calories - my stomach hurts - so have to gather energy to keep on eating every other hour or so.

Beth, I understand you will have your symptoms checked out tomorrow - I will be thinking of you with prayers.

Liz

yesyes2
Posts: 462
Joined: Jul 2009

Liz, Sorry, wrote the wrong name............blame it on chemo, LOL. Leslie

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

Leslie,
You wouldn't believe the things I blame on chemo brain.LOL. Seriously though the chemo brain last a lot longer than you think. John(FNHL-1-4A-5/10)

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

Leslie,
You wouldn't believe the things I blame on chemo brain.LOL. Seriously though the chemo brain last a lot longer than you think. John(FNHL-1-4A-5/10)

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

Leslie,
You wouldn't believe the things I blame on chemo brain.LOL. Seriously though the chemo brain last a lot longer than you think. John(FNHL-1-4A-5/10)

truckingalong
Posts: 444
Joined: Aug 2010

Chemo brain - we all are in it together!
Liz

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

HI Sue and all - just returned from a quick 5 day trip to see 3 of our 5 kids and 4 Grans in VA - great time and and the laughter and smiles were therapy for the soul!

Sue - I'm praying for your CT scan on the 18th and will be anxious to hear your results on the 25. Can there be a more stressful waiting than those results? Think not.

My third chemo session of Treanda (Bendamustine) comes up next week. I now have one week per month (this is it) just before the next 2 days of treatment that I feel almost normal and can function out of bed or on the sofa. Will have my first CT scan in about a month to see if this one is shrinking my abdominal tumor. Will be worth it all if so!

As for taste and smell, no changes in smell but definately have lost my taste for sweets. And I had the biggest sweet tooth in the world! Even all the Christmas cookies I made and were given to us held no allure for me this year - I consider it a blessing.

For those of you who hate Prednisone, NEVER, NEVER ever take a steriod called Dexamethasone. It's 20 times stronger than Pred - my Oncologist prescribed it this second chemo to try to help some of the really bad symptoms but I can't take it again. Even 2 mg. dose let me sleep just 2 hours a night for the entire month(using a sleeping pill) and made me SO hungry I wanted to eat every hour. I just took it for 5 days following chemo but it sure stayed in my body for much longer.

Happy New Year to all and keep the positive mental attitude coming! Fran

allmost60's picture
allmost60
Posts: 3176
Joined: Jul 2010

Hi Fran,
The thought of taking another steroid STRONGER than pred is wayyyyy scary!!! I wrote it down and will keep the name of that one in my wallet, and believe me..I sure won't take it NO MATTER WHAT my doctors says...Thanks for the info! I'm sorry your treatments are so rough on your body...breaks my heart hearing what all of us have to go through. I'll be praying for you also that your scan will show shrinkage of your tummy tumor.
Best wishes Fran...Love...Sue (FNHL-2-3A-6/10)

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