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Vickio-----Mike49-----mensright

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

OK, I need to know how things are going with each of you....I am just ahead and want to try and circumvent any problems that may arise for ya'll that can be taken care of before they arise.......OK spill ya'lls guts......I will let ya'll in on a little nono I did. I got finished with my last treatment and was suppose to have a neuplasta shot so that I could have my white blood count up for the next treatment. I got my pump taken off the 2 weeks before and skipped out when the nurse said I was all done and didn't get the shot. I knew that I needed the shot to continue my treatment regimen but the thought of having 2 feel good weeks in a row was to much to pass up so needless to say I went in yesterday to start chemo and my white blood count was to low so 3 shots on neupagen and I will start again next Tuesday on #6 treatment. I did tell them that I knew so that none of the fine nurses would get in trouble for letting me get out of there before the neulasta was given. I felt bad for doing and only prolonged the inevitable, but I sure do feel good right now. OK, lemme know if ya'll need anything or just wanna talk or vent..... I got the lead.....follow me to NED :-) :-)

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

OK,

I am beginning week 3 with the 5FU pump, and just had my 11th radiation treatment. Things are happening. The nausea was awful, but we now have the right med combo, mixing dexawhatever with compazine, plus they gave me the IV of, ok I forgot, but it starts with an A. Tomorrow I go on Kytril for a couple of days. I actually cooked dinner last night and ate it! The mouth sores are starting, my lips are swollen and blistered, but I am now on MagicWash & it helps. No new sores in two days now. And, of course, with all this is the diarrhea...Immodium is my friend.

Today is a good day. I am watching DH put up the outside lights on our fences. It's 25 degrees out, so I am watching from INSIDE! I am no fool!

Mike & Mike...your ball!

PS...Thanks for checking on us Buzzard!

Vicki

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Every day is a good day hun..........and diarrhea, just means your enjoying what you eat.....LOL....thats my reward for all this punishment we get. I eat anything I want....Keep up the good work....7 more treatments and its over here and you'll be there also before ya know it............. :-)

menright's picture
menright
Posts: 258
Joined: Oct 2008

Vicki:

Glad you are making it through. I too am on week three with no radiation though. Just 3-different chemo drugs. No nausea. I may have radiation in the future and I wonder if that is your cause of nausea. If so I have that to look forward to. Good luck. It sound like you are rolling with the punches. I too have cold temp here in Connecticut. one of the drugs has a hyper sensitivity to cold side effect. Snowblowing in the next few weeks should prove interesting if not impossible.

Good luck.

Mike

Mike49's picture
Mike49
Posts: 269
Joined: Nov 2008

Thanks for checking;
I was just about to put a thread out and I am even happier to respond to your message. I had a PET Scan Monday and as you know I have been fighting a wound infection since surgery in October. The PET showed metabolic activity at the site of the wound and and other sites along the incision parallel. My Oncologist does not know if he can believe it but since we are starting Chemo he wants to go ahead and agressively treat just incase there are areas of cancer or a lymph node they did not excise that is positive.

Today was day one of FOLFOX, I am feeling pretty good, got a little hint of nausea and medicated (ZOFRAN) and feel good again. I am on the 22 hour home infusion and go back for more 5FU tommorow. I am glad I have resumed the fight, the waiting to heal was giving me anxiety.

I choose to believe that the PET is showing the Puncture sites from where they aborted the Laporoscopic removal and the large spot is the remaining healing incision which infected while an inpatient. My doctor thinks this is plausible and wants to repeat the PET in 2-3 months. In the mean time he is going to add AVASTIN to the regiment beginning with cycle 2 to get aggressive in case the PET really did identify metastasis. My attitude is great and my spirits high.

Infusion Chemo team were great, I get care at my Phoenix VA med Center and think the world of the Oncology team and my Oncologist. I'm working the program and following the sage advice of friends like you Buzzard, all the way to NED. Thanks for the interest and sorry for the lapse in communication over the Thanksgiving weekend.

Best regards,
Mike49

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Mike... the fact you have been having wound issues, which means there was also infection involved, it is no surprise that the area lit up on the scan. Good for your oncologist that he is going to go ahead and fight it aggressively (better to err on the safe side)... but I think you can rest easy that all is ok. Infection will light up a PET scan... even residual. I had a cyst on my back that got infected (had nothing to do with the cancer) back in July. My GP took care of it and by the time I had my PET scan in late August, it was all better and completely healed.

After my PET scan, when I was in the changing room getting back into my clothes, the PET technician came looking for me. She asked if I had had a cut or scrape or something on my back. At first I had to think about it, then I said, "Well, last month I had a cyst that got infected, but it's all cleared up now." She asked if she could take a look... and when I pointed out where it had been, she said, "Aha!! That's exactly the area that we were wondering about!" Sure enough, even though the infection was all cleared up and there was nothing to see or feel, it still lit up the PET scan... whether it was residual infection or new scar tissue :)

Hugggggs,

Cheryl

Mike49's picture
Mike49
Posts: 269
Joined: Nov 2008

In regard to my PET, I had a lot of skin brakedown from being bandaged for over six weeks, I had even developed, right at the margin of my bandages, an ingrown hair or boil from the tape. It was nearly resolved when the PET was done, but its not completely gone even today.

I am glad to fight aggressively anyway and my Oncologist has his doubts about the scans diffuse findings. I feel better hearing your experience, I knew these things are picking up metabolic uptake of the radioactive glucose, the glucose uptake shows that the tissue is fast growing, but it doesn't have a sign on it that says , "cancer".

I have residual scar, active healing and resolving infection all in the area of the scan results. So for now, like my college my college theme song, Fight,Fight, Fight, onward to NED.

Mike

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Sounds great bud. keep the positive attitude...if the zofran stops working for ya try ansemet. 1 pill every 24 hrs. its working great for me and I tried Compazine first , then Zofran, now Ansemet and it seems to be doing good...Prayers for ya that the light is only scar tissue, lets just says thats what it is and go on to something else. No sense in worrying about it, it is what it is, My bet, scar tissue. So, go out and do something good for yourself, you also VickiO...both of you deserve it. OK Now where is mensright at ??? APB out on him..... :-)...........

Anyone else want on this bandwagon climb aboard...its open to the public...LOL...Gonna kick the cancers butt, all of us...............!!!!!!!!!!!!!!!

menright's picture
menright
Posts: 258
Joined: Oct 2008

Thanks for your note and interest.

I am moving into week 4 of chemo. My treatment consists of daily Xeloda (2wks on 1wk off); weekly Erbitux (the rash on the face has made me share with all my co-workers); and Oxaliplatin (every 3-weeks) this one has intense cold sensitivity and drinking warm water gets old fast.

I have this series for 6 more weeks then a CT scan to prepare for surgery. Then I guess it is 4-6-months of post surgery chemo. Then I am NED bound!

Good appetite, no nausea so I count my blessings. I eagerly watch my hair and it is still there.

I appreciated your story and the way you told it about eating NUTS while on chemo. I haven't touched one since. I have shared your story with a smile on my face. Thanks and keep the stories coming. Sorry to hear about the blood count issue. Good luck.

Best Wishes!

Mike

Mike49's picture
Mike49
Posts: 269
Joined: Nov 2008

Good to see you back, I am on FOLFOX for 12 cylcles tommorow noon ends cycle one. We are on our way to NED. You have people out here, as I do too.

Sorry to hear about the facial rash, these are the things we go through. I am drinking warm bottled water and a glass of red wine each night. I touched a cold can in the fridge, and got the pins and needles effect. That OXiliplatin is sneaky but real.

Got to get your tumor down to size by surgery, it'll happen then we'll be steps ahead.

I was wondering how you were doing, glad to see progress is being made and your hanging tough man.

Mike49

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

mensright, the blood count was of my doing only because I wanted to feel good another week. I only prolonged the inevitable though. I simply got out of the office before they realized that I was suppose to have gotten a Neulasta shot. Well, instead I got 3 neupagen shots tues,weds, and today and start back chemo next Tuesday. The oxil seems to ease up on being so cold sensitive on the off weeks but the weeks Im on it seems like 50-55* is the magic temp where it hurts below it and is ok above it. I drink coffee constantly so the cold drinks don't bother me not getting them. I do hunt and fish all year long so yeah that is really hard to deal with but its ok...
My tumor was golfball size when we started radiation and it was the size of a small marble when we took it out. The radiation will do the trick.
I sure am glad to see you 3 at least doing ok with the treatments. Im here if any of you need anything at all. or anyone else for that matter...God Bless you all...........

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

Well, I am starting week 4 with 5FU & radiation. The side effects aren't so bad...compared to what they could be.The nausea is under control with drugs (Compazine mixed with either Dexemethasone or Kyrtil, depending on the day) and as long as I eat. The weight gain was a surprise, but hopefully it's a lot of fluids. The radiation side effects are tougher. Trying to balance whether to have constipation or diarrhea is always a challenge. And the sunburn and bleeding is getting worse, but livable.

The biggest thing is the exhaustion. It is hitting me hard. I had to face the fact that I can't drive myself anymore. I nearly had an accident today because I was so dang tired I wasn't paying attention.It's 45 minutes each way and it takes it's toll. So, my friends are stepping up now. At least my appts are first thing and I am not messing up their whole day!

Thanks for being there. It helps. I have been a little depressed this week, but getting the tree up and getting into the Spirit has helped. I know I am in the early stages of treatment, and that I have a rough year ahead, but sometimes I just want to be done, you know?

Vicki

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

Did you get cold chills? Sometimes it feels as if my blood is ice for a few seconds, then it goes back to normal. I forgot to ask the doctor about it this week...I will write it down for next time.

V

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Yep been a rough year for me too but Im almost done. It was rougher on my family but we all got through with the help of God made it through it all in flying colors...It seems every time I get to feeling a little sorry for myself then he leads me to someone that life has been a lot tougher on then I feel like a heal in feeling sorry for myself, I get my head back on my shoulders and move forward.
Cold chills, no I have never experienced it except when they shot the barium up my now gone tail, and yeah that sent cold chills through me, but no not with the chemo/rad/treatments...they have warm blankets there at the treatment center and also at Post op chemo if you ever want one, Chemo patients are lucky in a sense, the medical field seems to tolerate or not tolerate but lean toward doing more and being more lenient to a cancer patient and I think its simply because of all the hell we go through. If you get cold chills ask for a blanket. Tell them whats going on, they can't fix what they don't know....your being a real trooper, keep up the good work....God Bless ya,

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

The chills don't come when I am in the chair...it's at random times at home, or anywhere. It's just like that feeling you get right before something bad happens, like sliding on the ice, thinking you will hit something.It's truly random and not often, just strange. My team always has blankets and comfort available; they can even anticipate me sometimes. I said it before and I'll say it often - these people were specially created by God to help us. I don't know how they can do it.

Vicki

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