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Chemo Rd. One starts Monday

BarefootBob's picture
BarefootBob
Posts: 72
Joined: May 2012

Hello all my brave warriors!

As you all, most know...my cancer has spread and Metastasized all over my body. After getting a few other opinions I will be doing what intimately was suggested by my new doctors at University of Chicago Medicive. I will be doing four rounds of this chemo cocktail that's a bit different than most. This cocktail has no ribotuxin (sp) for they are saving that for after chemo. They believe it will attack the tumors better w/out being brought into the chemo mix.

It will be one week on and two weeks off. I can do all that down here in peoria. When UofC starts to administer the ribotuxin ( round two) I will be going up there once a week for a month and then onces every two weeks. The third phase will be some new trial drug I will be using thru them and has shown tremendous improvements in SCC patients.

Plus they are getting my original tumor removed from my tounege to do some studies on it to see if they can locate exactly what they are dealing with.

I have been in bad shape lately. I am very sore and these lumps are not getting any better. Plus they chose the worst parts of my body to pop up on to make it just that more uncomfortable to sit, lie down, recline, cross legs, kneel....you get the picture.

Anyway, I am starting to look at other more "natural" and non toxic ways to help... The pain meds just are not working.

The only question I have is this: the four day chemo I am doing from what I understand is, I go in on Monday's where I will get pumped full of this cocktail for about 4-5 hrs, I think? Then the send me home with a fanny pack four days until Thursday. They than remove the pack that will be administered thru my mediport I had installed about two weeks ago. Anyway, what am I to expect? Am I gonna get sick as hell, feel like crap for these next five days or what? Is there anything I can do to prevent some nausea, keep strength etc?

Thank you, and sorry I've been away for awhile... Took some family time to do some things and was pretty depressed to hear I have 8-10 months to live. Just not fair to my wife and kids. They are all to young, way to young to deserve any of this.

Much love,
Bob

CivilMatt's picture
CivilMatt
Posts: 3093
Joined: May 2012

Dearest Bob,

Well there isn’t a whole lot I can say except I am very sorry for the turn of events. I have no experience with the form of chemo you will be taking, but I hope and pray you can give it your all. It isn’t fair that any of us got cancer and even less so that someone would get it again. I will maintain faith in the treatment regiment you will be going through and hope to have a fun conversation with you again (like we did over the 4th of July weekend).

Give it you’re all brother!

Best,

Matt

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

That you have to go thru this. I pray that this treatment will be just the cure that's needed. I can't give you any help on what to expect as I had erbitux but I'm hopeful that someone will come along very soon and help you with this. Please don't give up the fight, give it all you've got! I will be praying for you and your family, be strong!
Billie

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

Hoping that they get the right mixture to knock the crap out of this and heal you.

The chemo for the fanny pack sounds like 5FU. If so, myself and several others had that along with various other chemo cocktails simultaneous.

The 5FU wasn't anything especially worse than anything else. It does seem (or at least to me) cause you to emit an odor that smells kind of putrid...like cat urine, LOL... or as my wife would say when I soaked in the tub, "A big medicine bag"...

Anyways, it's a little annoying hearing it squirt into you every 30 seconds...

But just get your head around the idea, that it killing cancer cells every 30 seconds, never giving them the chance to take hold.

The pump will run out Thursday night, they'll show you how to clamp it off, and turn it off.

Nothing big deal...you can handle it fine I'm sure.

Best,
John

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

glad to see you posted to give us an update ...

....I too only had Erbitux so I can't relate to your questions..someone will soon I'm sure ...

I like to see the plan of attack.....praying it does the job on all the mets ...also praying you can get some pain relief and comfort...

I'm sorry Bob you are having to go through this .....in my early days (when I did not know what had just happend, after my diagnois, nor the outcome) I worried and hurt so much for having to put my family through the fear and worry (I of course was afraid too) ....

Thinking much about you lately, and Denis, ...keeping you guys in my thoughts and prayers.

Best,

Tim

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

glad to see you posted to give us an update ...

....I too only had Erbitux so I can't relate to your questions..someone will soon I'm sure ...

I like to see the plan of attack.....praying it does the job on all the mets ...also praying you can get some pain relief and comfort...

I'm sorry Bob you are having to go through this .....in my early days (when I did not know what had just happend, after my diagnois, nor the outcome) I worried and hurt so much for having to put my family through the fear and worry (I of course was afraid too) ....

Thinking much about you lately, and Denis, ...keeping you guys in my thoughts and prayers.

Best,

Tim

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

glad to see you posted to give us an update ...

....I too only had Erbitux so I can't relate to your questions..someone will soon I'm sure ...

I like to see the plan of attack.....praying it does the job on all the mets ...also praying you can get some pain relief and comfort...

I'm sorry Bob you are having to go through this .....in my early days (when I did not know what had just happend, after my diagnois, nor the outcome) I worried and hurt so much for having to put my family through the fear and worry (I of course was afraid too) ....

Thinking much about you lately, and Denis, ...keeping you guys in my thoughts and prayers.

Best,

Tim

BarefootBob's picture
BarefootBob
Posts: 72
Joined: May 2012

Haha, I just got back from my first round of chemo with the fanny pack i spoke of in an earlier post...and sure what do you know it John that chimes in with the 5FU!! sure enough it is, I actually almost started laughing when my Oncs nurse stated thats what id be bringing home with me. You could me on some ACS Jeopardy game with the amount of info you know and how great your knowledge is.

You may or may not get this a lot but you are doing some wonderful stuff here on the site. I see you post in nearly every thread and normally have some well thought out and accurate information, but you do it out of the kindness of your heart. I and I am sure many thak you for that.

I know that I can come here on any given crummy day for me and am ssure you will respond with something to help brighten my day.

P.S. - this first round of chemo should put me at Dec 21 or so.

Much love,
Bob

D Lewis's picture
D Lewis
Posts: 1547
Joined: Jan 2010

Talk to the doctors about your concerns regarding nausea. There are several good nausea drugs, and they can prescribe several at the same time. I started with Emend just before treatment, took zofran for several days, had ativan for breakthrough nausea, and when I still felt bad, I took compazine on top of that. Ask for the meds up front, and take them before you start to feel sick.

Sending you healing and strengthening thoughts. Kick some cancer a**.

Deb

BarefootBob's picture
BarefootBob
Posts: 72
Joined: May 2012

That is what it is called, erbitux, that..or whatever you guys said. I guess they normally put it in the chemo mix, but mine will be replaced with something else. So the erbitux, will be administered in about 3 months, solo, after that first round of chemo. The oncologist believes that it is better served without the other drugs as it may decrease its effectiveness. I'm not sure, like I said, I have spent the last few weeks in a daze, thinking this will be my last Christmas, birthdays, etc with my family. Now I am trying to gain strength again to get positive enough to get thru these four rounds of chemo.

Thank you all again, I will be in touch. Hoping that these tumors will start to shrink soon as the knots of these lumps are puffing out of my skin so far I can't seem to do much to even feel motivated...does chemo help reduce these things? Is that the purpose? I don't know, just not sure where to turn to anymore. They those that go through AA have to turn their power and will over to the care of God, and basically give up all control. I kinda feel the same, no control over anything since May. This **** is just doing as it pleases as it destroys me from the inside out.

I too pray that something works and I can have some better days ahead.

Much love,
Bob

CivilMatt's picture
CivilMatt
Posts: 3093
Joined: May 2012

Dear Bob,

Like Tim I did have Erbitux as my chemo. Even though I read the literature and listened to the docs I can’t very well do it justice at this moment. It gave me a pimple like rash covering my torso and gave me a face covered with the same. My face never looked too bad; I was never embarrassed to go out. If Erbitux is your juice then Tim and Blackswampboy can feel you in on the particulars surrounding it.

Once again, I am sorry for this path you must take; we all support you all the way.

Best,

Matt

phrannie51's picture
phrannie51
Posts: 3852
Joined: Mar 2012

a couple of weeks, Bob....I'm glad you're keeping us updated. I had the fanny pack...mine had 5FU in it, administered for 4 days, then they took the pack away. I don't know what is in your fanny pack. John (Skiffin) did fine on 5FU, it gave me mouth sores....but never did I feel sick (course I took my anti-nausea meds all thru the four days and after for another few days)...

I would certainly be hoping that once the chemo starts flowing that the lumps would begin to disappear....It would logical that they would, I just don't know that for a fact.

I am sending you a ton of positive thoughts, and prayers Bob...

p

Grandmax4's picture
Grandmax4
Posts: 597
Joined: Dec 2011

treatment works and you're on the road to recovery

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

wondering where you live?

prayers continue

john

BarefootBob's picture
BarefootBob
Posts: 72
Joined: May 2012

John, I live in Peoria IL - This is where I had my first two surgeries done and my Radiation there at the Illinois Cancer Center.

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

Sometimes there is nothing to do but to pray. I know in my case and not sure why by I refused treatment after the cancer came back a third time. My body just could not take it anymore and like you I was not giving much time to live. All I know there were a lot of people praying for me and my brother got me hooked on some herbal stuff and the cancer just stopped growing and went away. I am not sure why God healed me maybe my work on this earth was not completely done yet. I do have a Health page on my web-site that offers some good information on staying healthy. I am planning to put more info on it soon about things we can do when we have cancer and are going through treatment. If you like give me a Visit at www.restoringgodstruth.com and just click on the Health tab. For now my brother I will keep you in prayer as well as your Wife and family.

God bless
Tim Hondo

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

I am no doctor but the way I have read treatments (we have a young lady at our church who has cancerous tumors throughout her body, she is only in her early 20's) and they were giving her chemo first to shrink / disolve the tumore BEFORE they do the surgery...this past month we heard her tumors were responding VERY WELL to the chemo...but I don't know what her "juice" is.....they responded so well that surgery for now has been delayed to see if the tumors shrink / disolve further or even completely.

In fact, now that I think about it ...I wonder if your tumor / type cancer have a different name or something they call it....I could find out what her cancer type is...(I just assumed yours was head and neck related) ....

She is getting treatment at the MSTI clinic in Boise ID, which is where I went as well.

Keep us posted Bob...you remain in my prayers.

Best,

Tim

BarefootBob's picture
BarefootBob
Posts: 72
Joined: May 2012

Tim, they told me that because the original tumor found was in the tongue, it is considered under head and neck. I actually wonder erred they same thing, especially after the biopsy came back. I asked , "so is it still the squamous Cell Carcinoma"? And just noded and said yes. And immediately it stays that way because it is from where it was first found.

I guess I could still ask to have more tests done.

Anyway, thanks for the heads up.
Much love,
Bob

katenorwood
Posts: 1863
Joined: May 2012

Bob,
It sounds like your team is doing specialized planning on your mets. They must be wanting to do this if they are taking your original tumor. This is very good news. I am wishing you the best Bob, and keeping you and your family in my thoughts and prayers. Also am praying for the team of doctors that God guides their minds and hands to heal you ! Katie

hwt's picture
hwt
Posts: 2008
Joined: Jun 2012

Keeping you and your family in my prayers.

Candi

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

As I said i had erbitux and besides the bad rash I did very well. I just wanted to tell you that my dr said they have some patients that stay on a maintenance level dose of erbitux forever and he said it's amazing to see the tumors just melt away. I'm praying you will do wonderful on these new meds. Please do keep us posted so we can know how and what to pray for. For now you are in my prayers for peace and trust in your doctors.
Billie

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Don't have much to contribute expect my best wishes and prayers. I received Erbitux with essentially no side effects, if that is relevant. Rick.

ditto1
Posts: 634
Joined: Mar 2012

So sorry you are having to go back in to the ring for the fight of your life. I just feel you will get it done. I had 9 Erbitux treatments and had no side affects that I can remember/ mine were in conjuction with 33 rads and 2 Cisplatin treatments when 1st dx. I did have some pimples from Erbitux but nothing like some have mentioned. Diane and I have you in our prayers.

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