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stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi All,
Well I start my chemo and radiation tomorrow. But I am special. I get the bonus package. Start chemo at 10:30 then go to RO at 3:00 for the dry run, 1st radiation treatment special. What a deal huh? Went Thursday for the dry run and the machine was broke. So I get the package deal tomorrow. Keep me in your thoughts and prayers O.K?

Best
Steve

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

You can do it! How long is yours going to last?
I am hoping to get a call this week about my surgery. Though I am not looking forward to any of this, I do want to get it over with.
Mary

debbiejeanne's picture
debbiejeanne
Posts: 2434
Joined: Jan 2010

Mary and Steve, you are both in our prayers and always will be. the treatments will be rough as they are for all of us but you WILL get thru it. Just keep your faith and be tough and never give up. Cry when you need to and come here and vent if you need to. We have all been there or are still going thru it so we will definitely understand. Please take care of yourselves and keep us poted.
God bless you,
Deb

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Steve,

We will be right there with you every step of the way. Just keep taking it one day at a time. Update us as best you can. I'm right behind you.

warmly,

Deb L.

p.s. When things start to get you down, just remember; Haagen-Dazs Vanilla Honey Bee ice cream. H***, it even makes "Ensure" taste better.

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

You can do it Steve!! You will be in my prayers.

Glenna

fsdman
Posts: 51
Joined: Jul 2009

Good luck Steve. We all survived it and so will you.We are here to help ease your journey as issues arise. I got thru it by knowing that each day I got thru brought me a day closer to the time when I could start going in the other direction and heal.One day at a time as there are a finite number of days.Then its over-it will end it will get better.My thoughts were always that this will come to an end and I can put up withit until then.Now,go kick some butt!!Treatments are going to beat you up, but not beat you.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Steve,
Wow - excited for you - there's something about taking action that made me feel better, even though I was nervous, and knew the chemo and rads attack your body - they're necessary evils, and I was glad to get them in play, to beat the cancer down.
Are you going on your own, or taking someone with you for chemo? Where I go, you can take one friend. You can also take in diversions (books, magazines, laptops, etc.). Oh - and don't know about others, but there are refreshments and blankets at my place, and it's always cold. Also, for me, the mask wasn't as bad as I thought it'd be during treatments (so far).
Good luck tomorrow - you've got two new team members in the fight now. Breathe, and go in.

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Thanks all,
Mary ,in answer to your question I will get 5 treatments of cisplatin and 5FU every Monday, still not sure how long those will last i.e., 24, 48 96 hrs or what, and 35 glorious daily radios. As Yoda might say, It's butt will I kick, Hmmm? And yes Pam, my wife is relentlessly
by my side, as is my oldest daughter, which is a very good thing.

Blessings on you all,
Steve

Deb, have already sinned and partaken of the Haagen Dazs. GOOOOD STUUUUFFF.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Good luck my Man, you know you are in my thoughts.

Best,

Mick

CajunEagle's picture
CajunEagle
Posts: 361
Joined: Oct 2009

Steve. When they put the mask on, if anything fitwise is uncomfortable, let em know right then and there so adjustments can be made. Ain't nothing like pressure on your chest or throat when they snap it on. Also, get in a routine of counting. When the treatment started in the Tomotherapy tube, the sound would start on the left side of my head and rotate to the right side. It would do this 31 times, then it would be over for the day. One day I would count from one to thirty one, the next from thirty one to one. Every now and then I'd play my favorite golf course in my head, or catch Bass from my best fishing hole. I also had a couple of young Radiation Techs who liked to play "Disco Inferno" (LOL) during treatment, and "I'm coming out" by Diana Ross when finished. Yea....them two were a hoot. Good luck !!

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

You can do it, it's just another thing.....

Before long you'll be used to this routine of constantr survelliance. What's kind of funny is when you have finshed and only go in occasionally for check ups... It's like you were the center of everyones attention, then all of a sudden they cut you lose....

I had my concuurent on Mondays, Carboplaten in the morning, Amifostine and Radiation in the afternoons for that day.

Hang Tuff Steve, one day at a time man, that's how you do it....

John

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Steve- best wishes, and my Prayers are with you, and Mary.

It is likely you'll be getting chemo drips on Mondays. I had the 96-hour thing, but that's with pumps hooked into my Port. The weekly thing is typical of drips. It usually starts fairly easy for the patient, Steve. Takes awhile for the stuff to take it's toll. They kinda ease one into it. Again, down the road I urge you to let your Dr. and the Nurses know when it's getting a bit much, you know, if it does.

You're gonna be all right, Steve. Trust me.
And Mary- you are sharing in this historic time with Steve. Churchill was right, I think, about times like this being our "finest hours." Nobody wants such times to ever happen, but the same goes for war, car accidents, etc. Such is life. Just up around the bend, you two just might look back at the battle in front of you as having been of the finest hours. It is possible.

Believe.

kcass

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi Kent,
Thanks for the encouraging words. My MO said that I would have a pump that I would take with me and bring back. So much has been thrown at me, I guess I just wasn't listening to what she said. My Bad.

Steve

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

You sure about the pump? If you go to chemo at 10:30, then rad at 3- sounds like drip time between the two, to me. And, 5 weeks of Cisplatin via the pumps, not pump, is kinda unreal, Steve. They can only put so much of the stuff inside the body. And, if you don't have a Port- you will not be getting the pumps. And that might be a good thing. The pumps put, basically, 4 weeks of Cisplatin into the body in 4-days, as my Onco explained to me. Only so much of Cisplatin that they can put inside us, Steve. Rule of thumb, because of the risks for damage to organs, like the liver, etc. Is possible your pump could be the stuff other than Cisplatin, though. That would be medically possible.

Again- you're gonna be all right. And please keep us informed on how you're doing.

Believe.

kcass

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Kent,
I don't know how it is all going to work but yes, my understanding is that I will be on the drip for a few hours tomorrow. I guess this is because I am a chemo "virgin" and they want to monitor me. I do have a port and a peg, got em last Wednesday. In addition to the cisplatin I will also receive fluorouracil, better known as 5FU. Like I say, I don't know the procedure yet but I am sure she said I will have a pump, reviewed my notes, and bring it back the next day. Maybe this will just be the 1st time, we will see tomorrow. Whatever the regimen, this is one doctor that I trust with my life. Just ready to get on with it so I can get DONE with it, know what I mean? Again thank you Kent. You have been there for me since the 1st day I joined here and you have been inspiring to me to say the least.

Best wishes to you and all,
Steve

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

What is a pump? Dont you just go to chemo... they drip it in and you go home? Do you have to pump it in at home too? Is this hard to do? Do you do it yourself? I know I am a nurse but I only do home care with children, dont know much about chemo. Sounds hard to do?
Mary

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi Mary,
I don't know yet, but I'll find out tomorrow. I know it won't be hard though. Piece of cake, as they say. It sounds bad I know Mary, but it is something that I may have to do, doesn't necessarily mean you will. Hang in there, you will be fine. Remember whatever happens we will beat this O.K.?

My best to ya,
Steve

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Morning Steve,

During my initial nine weeks of chemo (three week cycles), I had a pump for the 5FU. I would go in on Monday of each three week cycle for the chemo (Cisplaten and Taxotere). I'd spent all day usually on those Mondays. At the end of the day they'd hook up a small pump that was in a fany pack. It hooked into the port in my chest. That would pump in the 5FU about every 30 seconds or so. Somewhere around late Thursday night it would be empty and beep. You just turn it off and clamp the tube. Friday morning I'd go in, they'd remove it and flush the port. I think they may have given me hydration fluids then also.

The following Monday (week two), I'd go in for fluids and Neulasta. A bone morrow regenerator to stimulate blood cell growth. Around Wednesday that first week it felt like I had the flu. Bones hurt and ached, but it only lasted that first time and Tylenol helped get over those few days. The reminder of that three week period was mainly recouping.

I'd lose my taste for about a week or two, then it would come back (just before the next cycle).

Around the beginning of the second cycle I started losing my hair. It didn't hurt or anything, just my scalp felt a little tingly I guess.... I wear it short and from being in the Marine Corps for several years, I just flat topped what I had and wore it pretty much like that through my treatment.

The pump is OK and you get kind of used to it. But I couldn't wait to get it off at the end of the week. It just didn't seem like I was fighting on my own when I'd hear the pump every 30 seconds or so...(not to mention having to wear the fanny pack).

Not sure of others either, but I seemed to have an odor when getting the chemo and especially the pump. It might have just been my imagination, not sure. I just think or would think that all of those chemicals were permeating from my body.

Good Luck and the pump isn't a big deal. You can wear lose clothes and you really can't see it that well.

John

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Steve and Mary,
I had a pump for chemo. I would go into the "chemo lounge", and spend hours getting hydration, anti-emetics, steroids, anti-allergy meds, cisplatin, taxotere, and more hydration. Then, the 5-fu pump got installed (hooked up to my line). The drug was in a plastic bag inside a fan ny pack that also held a battery operated pump. I could wear the fanny pack, or carry it near me (I was attached to the pack by the tubing going from the pump to my line (PICC, for me). If I held my arm at a bad angle, or kinked the tube, an alarm would go off (not often). I had the pump going 24/7 for 5 days - 5-FU ran out right at 5 days, and the pump would be removed very soon afterward (pumping stopped whether the pump was removed or not). I did nothing to the pump unit - a nurse hooked it up; a nurse unhooked it.

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

Well Steve, Good news and bad news....Good news is that the 5FU was not the drug that kicked my butt. Really didn't have much trouble with it at all as far as side effects. Bad news is twofold...That *&$% pump will irrate the hell out of you with it's "on the closk" PSSSST sound :>)every few minutes/seconds

And you better hope your bath tub doen't have the spigot at the end where you will have to lay when taking a bath and you have to set the pump on a stool by the tub.

Just joking, the pump is a pain but it is not a big problem. It injects doses an schedule 24X7. I had another drug, DDP, that I took every third week and it was the one I had to prepare for.

Unlike Pam, mine had the drugs inside the pump mechanicism.

I named my pump "hemmaroid"

Hang in there.

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

Well Steve, Good news and bad news....Good news is that the 5FU was not the drug that kicked my butt. Really didn't have much trouble with it at all as far as side effects. Bad news is twofold...That *&$% pump will irrate the hell out of you with it's "on the closk" PSSSST sound :>)every few minutes/seconds

And you better hope your bath tub doen't have the spigot at the end where you will have to lay when taking a bath and you have to set the pump on a stool by the tub.

Just joking, the pump is a pain but it is not a big problem. It injects doses on schedule 24X7. I had another drug, DDP, that I took every third week and it was the one I had to prepare for.

Unlike Pam, mine had the drugs inside the pump mechanicism.

I named my pump "hemmaroid"

Hang in there.

pk's picture
pk
Posts: 192
Joined: Aug 2009

You are on your way!!!! The waiting is tough. Now you are moving forward. My hubby finished his treatment the end of Sept. 1st PET was clean. We head for St. Simons Island, GA on Friday for 8 weeks. Golf, biking, relaxing on the beach.
Hang in and hang on. It's a rough road, but you will recover and become you again!!!
Keeping you in our hearts!!!! and prayers too!!
Phyllis & Bob

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I will be praying for you. You will have so many people lifting you up, and with you in spirit, tho we all may be far away.

Blessings and Peace be with you.

Hondo's picture
Hondo
Posts: 5791
Joined: Apr 2009

Break downs are normal I guess, in all my treatments I think there were 4 or 5 break downs. One time I was laying there just jetting started and the thing broke, had to get up and wait till it got fixed.

All the best to all of you as you start; you know you will be in my prayers

Landranger25's picture
Landranger25
Posts: 207
Joined: Nov 2009

Hi all, sounds like what Steve is getting is pretty much what I had. The Cisplaten on Mondays in the Cancer Center is pretty much an all day thing. Couple hours of hydration, then couple of the Cisplatin and then more hydration and a drug that will make you pee like a monsoon. Just before you leave a little battery powered pump pack is attached to your port and you take it with you until Friday. (96 hours) They give you a little fanny pack to wear and run the tubing up under your shirt. This is the 5FU. The pump fires about every 25-30 seconds. Just a short humming or buzzing. I put the pump down next to my body while I slept. If you have a cat at home better not let him in the bedroom. They seem to be attracted to the thin rubber tubing that delivers the chemo. (and ipod headphone wires as well which are similar and I have bought several for my daughter because of our cats) If the chemo leaks you'll have a huge toxic mess to clean up. Not good. Pump or IV pole went with me to radiation. Just rolled it on in and up to the table and then back when done. Good luck Steve, you can do this. As said above, one day at a time. Soon the road ahead to finish will be shorter than what you have behind you and then you'll be done.

Mike

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi Mike,
From my foggy memory, and sketchy, at best, note taking, you are spot on as to what the MO told me . My daughter had a recorder that I didn't know about and she told me this morning. Most of the other doctor visits she, or my wife, just took notes on the computer. Thanks for writing as this has taken a lot of the anxiety and edge of uncertainty off of today's upcoming events. Sounds like I will be enthralled with the seemingly exciting schedule.LOL

Thanks Mike,
Steve

Thank You too Sweet,Hondo Wait a minute, THANK YOU EVERYONE!!!!!!!!

debbiejeanne's picture
debbiejeanne
Posts: 2434
Joined: Jan 2010

Mike, sweet said it best, we are there for you in spirit and you are definitely in our thoughts and prayers. Go get'm and we will be here when you return to let us know how it went. We are also praying for your wife and daughter as this journey will also be hard on them. The most important thing to remember is to hang on to your faith and remember God will help you through this. Hang tough and go kick some butt...lol, :o)
God Bless,
Debbie

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Steve,

Holding you in my thoughts. Now, get out there and have one of those "finest hour" moments we were all discussing yesterday.

warmly,

Deb

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

Hang in there Steve, you can do it. I just hope I can! With all this talk of pumps and ports and tubes.... is a person allowed to take a shower? I know this is coming for me, I need to be prepared for all of it.
Mary

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Mary,

Showers: Chemo Pump - yes (bag out of shower/tub); Feeding tube - yes; PORT - yes; PICC line - no (but I "sneak", and wrap my arm in press and seal kitchen wrap, then tape the ends, and shower the rest of my body, holding the PICC arm out of the water). It is awkward getting dressed with the pump for a while (PEG, too - I use an ID badge clip to clip my PEG tube to my bra to hold it in place. In the shower, I wear a long dental floss "necklace" (hah!) to "hold" my tube while I shower.
More fun to come . . .

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Pam,

Ah, the tools of our various trades... saran wrap, tape, clothes pins, badge clips, and a most innovative use of dental floss. I'm wondering if my small carabiners would be helpful to attach the various tubes and pumps. I've got a sweet little multi-pocketed photographer's vest that I haven't much used yet. Perhaps that would allow a greater level of comfort than a fanny pack.

warmly,

Deb L.
(Survivor of the infamous days 4, 5 and 6 post-tonsillectomy, now wondering when the pain will subside.)

CajunEagle's picture
CajunEagle
Posts: 361
Joined: Oct 2009

While telling me all the ins and outs of using the 5 F-U fanny pack, my oncologist tells the story of one of his patients calling in the middle of the night and saying the battery had run down. He told the patient to just "cut it off, then". The patient did as told by using scissors and "cutting it off" close to the Medi-Port. :)

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey girls,
When referring to these tools, do I need to start wearing a bra, or do I need to be a little more innovative than that???? I mean the thought of what I might have to clip the I.D. badge to. LOL

Steve

staceya's picture
staceya
Posts: 702
Joined: Jan 2010

Keeping you in thoughts and prayers. Hope it went as well as possible.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

A very good thing- all of those who've told of their pump experiences in this thread. So, Steve, your pump will be the Flourouracil.

My experience was a little different. I was not given the Cisplatin drip. I carried two pumps for the 96-hours of weeks #1 and #4, getting both the Cisplatin and FU5 together for those 96-hours. OF NOTE: FINALLY, I understand why the pouch they gave me was not big enough for the two pumps- typical is only one pump, as one of the Chemo Nurses admitted. I ended up buying a $5 school lunch pouch at Walgreen's to carry my pumps. At the time, I was rather frustrated with the pumps because of the pouch, but now I understand. Thank you.

As for the hassle, Steve: yes, the bulk of it is a nuissance, and you will take it to bed with you; however, the Port attachment held good for my two endurances, and all my anxiety about them at the start of week #1 was proven wrong. Steve, my friend, think of it as a Lifeline. Same goes for the PEG. Have you checked-into the formula thing, yet? 4.0, rather than the common 1.5, worked for me: requires less feedings/day, and is cheaper. For me, the 1.5 woulda required 7 feedings/day, and the 4.0 only required 4= a far-less hassle. And, I sometimes did a 1.5 with three 4.0s. Worst of times, three 4.0 was enough, Steve. Never lose sight of the fact that YOU MUST give your body the nutrition it needs to win this battle. ANN- IT'S YOUR JOB TO MAKE SURE HE GETS THE NEEDED NUTRITION, along with all else in this time of your's.

As Mick has noted, you will need over-the-counter for both extremes of regularity. Just the way it is. And, again- be open with your Drs. and Nurses about how things are going- you're fighting the bigC fight, and they realize the enormity of that battle. They will get you thru it. And if there are times you find their care lacking- let us know, and we will advise in the strongest of terms for you to make copies of, and present to them as evidence that they need to do more.

Steve and Ann- we are all with you, now, in the background. All you gotta do is have serious concerns, and then we step out of the shadows with our strong experience-based opinions to help you in any way we can. This is very much what we are all about, here. It is your battle, of course, but you are nowhere near being alone.

Keep us informed, and...

Believe.

kcass

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

Sounds like the same regiment they started me out on, was fine the first few weeks, everyone was super at my cancer clinic, and met alot of nice people. It gets rougher, depending on your weeks there, I had 7 weeks radiation and 3 chemo, with 3 in between hrydration treaments. Suggestion, eat all you can within the first few weeks and get the added pounds on you. it looks like you have good support. Good Luck, and if theres anything you need, ask your doctors, they'll do anything they can to lessen the pain. Good Luck. Dennis

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Dennis,
Good to hear from you, and thanks for the encouragement.

Regards,
Steve

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