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Kick-off Monday the 15th - 0800 Hours

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

Another one walks into the flames.

Tomorrow is Day 1 for my Chemo and Radiation odyssey. Looks like they will burn me for 38 days, ending on May 5th. I will be poisoned in three rounds, in week 1, week 4 and week 7. My chemo oncologist is planning to infuse Cisplatin over a two-day interval, for each of the three rounds. Someone elsewhere on this forum referred to Cisplatin as "the raging bull of the chemo world." Well, I'm ready to unleash the bull and to annihilate this cancer. I am ready for the medical world to throw everything they've got at this one. I have long-term plans that require me to be around for at least the next 40 years. I am seriously looking forward to being an old old woman with a really bad temper, and no cancer is going to get in the way of that plan.

Side effects? Bring em on! Every single step I take is going to be towards a complete cure. As my sweet daughter said: "Yes, its going to be ugly and yes it's going to change you in bad ways for the rest of your life, but the operative statement here is 'rest of your life.' You get to live it. So, shut up and get to work."

As always, the friendship, support, advice and prayers of everyone on this Board is what makes this journey bearable. Thank you all.

Deb L.

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

Hi Deb,
Will be thinking of you. You will do good. Keep us posted. I am not far behind you. I have my surgery in 2 weeks ( March 29). I so want to get on with it. I too plan on living another 40 yrs. I told my kids I want to see their kids have kids! I get scared sometimes and have to keep telling myself that I will beat this.
Did you have the PEG tube? Will your radiation treatments be 5 days a week?
Mary in Northern California

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

Deb,
The fight is on! So glad your treatment's starting. Keep up your winning/feisty attitude, and you'll muscle through the side effects. If/when they bug you, give us a yell - maybe someone has a handy trick up their sleeve to help.

Funny you should be planning on being the old lady with the really bad temper - I told my friend I plan on being the weird old lady on the corner. Good thing (for the neighbors) that we won't be in the same neighborhood.

Looks like you're up awfully late for the night before treatment starts - I couldn't sleep, either, even though I kept telling myself I needed to rest for treatment.

Do well - thinking of you.

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

Hey Deb,

Now you know that I will be there for you. I'm like you--- ready to complete the total annihilation of this crap. Go fight the good fight and don't forget your friend Steve!

GOD BLESS YOU DEB,
Steve

Fire34
Posts: 350
Joined: Feb 2010

Deb
Good luck today!!!! are you inpatient during your treatment or go back & forth. Hopefully if you have to drive you have someone to drive you. I know I couldn't have drove if I wanted to. Again Good luck and keep the positive attitude
Dave

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Hi Deb, I had a similar schedule with Cisplaten, Taxotere and the pumped 5FU (same weeks). Then seven weeks of concurrent with Carboplaten every week and 35 rads....

I didn't have any sides from the Cisplaten out of the norm...hiccups, heartburn, and that's about it. I did have one thing I haven't seen mentioned much, I lost most of my toe nails and my finger nails became very brittle. Most all of that has passed, except the nails on my big toes are just starting to come back...

I think the Cisplaten is the one that they want you to flush as much as possible during treatment giving you lasics and other stuff to flush it.

Just stay hydrated...HYDRATED, don't go dehydrated, been there, done that, not pretty.

I didn't have anything really from the Carboplaten either. I didn't even really need any additional sickness meds (maybe Zofran), but that was also for the daily Amifostine during that seven week period.

But of course the disclaimer...everyone is different and has different reactions....that goes for the driving also. I drove myself everyday other than Chemo days, and my wife drove me those days. Even during the 35 rads I drove and maintained a mostly normal schedule...like Steve on here, I did yard work, fishing and such, other than very few occasions....

Hopefully yours will be minimal, and you'll get through it as well as most of us have.

Thinking of you,
John

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

Hey John,

Very odd you should mention toenails. I just returned from seeing both my mo and ro and didn't mention this to either one of them. With all the activity I did this weekend I thought I might have stubbed my toe or something and just didn't remember doing it. If you wouldn't mind could you tell me what it felt like at first? Did it feel like maybe you mashed your toe or stubbed it? And did they change color at all? I know this may seem gross to some but I'm sorry about that, wouldn't want to offend anyone. This is just too weird. It seems now to be the toes beside my big toe on each foot. Let me know when you get a chance John, please.

Thank You,
Steve

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

TMI, Steve. Thanks for sharing...

Just kidding. Who knows, perhaps this information may be useful to me as well.

Deb

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

Sorry Deb,

You be nice to me. You know I am sick and can't take criticism right now. I am very sensitive. Toenails are serious. I need them to continue kicking this craps butt. Hey, I see you made it through the introductory session!!!
Way to go girl!!!.

Steve

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

Hey, Steve,

You may need to try loose shoes, at least for the interim.

Snerk.

Deb

p.s. I'm gonna cut-and-paste your answer and save it for later, when I get whiney. I like your way with words.

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Hi Deb (D Lewis), if you haven't lost any of your humility by now, you more than likely will by the time you've finished treatment LOL....

I've been poked, probed, examined and stared at either by medical professionals or just common people whom seem to be disgusted by no hair, fuzzy hair, discolored, peeling and raw skin....all while having a fanny pack strapped to you pumping poison into you through a tube stuck into your chest.

If they could ever walk a mile in our shoes....

God Bless and Good Luck,
John

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

John,

You recall the remark made by Chefdaddy Mike in the crowded elevator, don't you? If they don't treat you with respect, imply that you are contagious.

Yep, all modesty is already gone. In the interests of irradiating the lowermost reaches of all my neck lymph nodes, my rather elongated mask lacks about three key inches at the bottom to serve as a "Nefertiti Mask" rather than a "King Tut Mask" if you get my drift, which places my nifty little triangulation tattoo about half way down to my navel. So, while I am allowed the use of a gown during radiation treatments, I am not allowed to use it for very long.

Deb

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Deb,

LOL, glad you also can find humor in all of this.... I think it serves us well. Usually no one can appreciate my humor as much as I do... ;)

John

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Hi Steven,

I can't really remember them hurting or anything specific, but ya they felt a little different I guess. I just mainly remember them kind of lifting like when you smash one and the new one grows under the old one. It gets kind of discolored from not being attached well.

I just remember looking down one day and my nail was gone. I'd find them laying on the carpet, LOL, one every few days would be gone. I didn't lose all of them at once, it was probably over a few weeks, but eventually I lost all of them other than the ones on my big toes.

I'm about nine months out I guess (June 18th) and my big toe nails are still discolored and have a gap under about 2/3 of the nail. They just haven't come off yet. All of the rest have fallen off and have grown back now.

I didn't lose my finger nails, but they became really brittle. When I'd cut them as soon as I clipped one the whole end of the nail would come off. They've returned to normal also.

John

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

Deb, my treatment was similar to the one you are about to start. I had Cisplatin 2 days per week in 3 week cycles and 35 rounds of radiation. My chemo oncologist calls Cisplatin "the big guns" which I was happy to hear, I didn't care about the side effects, I just wanted the strongest drugs my body could tolerate. All of the doctors and nurses told me I would lose my hair but I never lost any, they were amazed, I was afraid it meant the drug wasn't working but was quickly reassured that it was.

I had the usual nausea for 3 to 4 days after the chemo but there are many drugs to deal with that side effect. I was tired all of the time but I think most of that was the radiation not just the chemo. All in all I think I made it through my 4 months of treatment in pretty good shape. Getting to my "new normal" is taking a little longer but I am not going to complain as I am five months post treatment and still in remission. I am not cured but I knew from the beginning that this was not an option for me as both of my cancers are inoperable and incurable. Cured is the greatest word in the English language but remission comes in a close second ;-)

Stay strong and keep up the positive attitude. I know from reading your posts that you will do well throughout your treatments and you will be a winner in the end. We are all here to encourage you along the way.

You are in my prayers,
Glenna

Hondo's picture
Hondo
Posts: 5607
Joined: Apr 2009

All the best to you as you begin the journey, remember we will all be here for you.

Take care

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Couldn't have said it better myself.

--Jim in Delaware

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

How will you be getting the Cisplatin delivered, Deb? Drips (I hope)? Do you have a Port? I am also Cisplatin and FU5, somewhat accelerated. And, I'm now 16-month. Magic mouthwash and prescrips for pain, etc., and NUTRITION, Deb. My Rad Dr. swore by the salt water, and the addition of baking soda seems to be typical.

Your attitude is a good thing, Deb. We've all been down, roughly, the same road, or are currently on it. Not an easy road, but one certainly can get up around the bend to the brighter days of post-treatment. Keep your eyes on what's up around that bend, and how your driving is doing- letting the Drs. and Nurses (and us) know if/when there's any problems. We're all here to help remove any obstacles keeping you from moving forward on your path. You will get there, Deb, as we all have.

Believe.

kcass

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

I'm getting the Cisplatin via an all-day drip, divided over two days. Each day, I get two hours of hydration, an anti-nausea pill, an anti-nausea syringe into the drip, a 15-minute anti-nausea drip, a two-hour Cisplatin drip, and then a one-hour saline flush. No port. Today it took three tries to get the infusion needle satisfactorily set into a vein. I was not a happy camper, but in retrospect - one down, five to go, and that's a lot easier to handle than a port installation and removal. (Stanford discussed with me the idea of induction chemo, and the idea of a chemo-cocktail, but for my particular presentation, the other chemicals would only create additional side effects, and would not enhance the Cisplatin. So, no port needed.)

I amn also without a PEG. Today, I was given a very stern lecture about the acceptability of a weight loss of ten or twenty pounds, and the absolute UNACCEPTABILITY of a forty pound weight loss. Then they weighed me and discovered that the "Haagen Dazs ice cream queen" had managed to gain 3 pounds since my training session last week. They actually cheered. I do know how quickly that can turn around, so I'm not feeling too cocky right now.

I am resolved to get through this. And I know where to go for the most relevant answers - right here, from the folks who have been there and done that. Thank you everyone.

Deb

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

Glad to hear about the Cisplatin delivery, and the name Stanford. Does sound very encouraging for you. Trust me, Deb- not getting the induction Chemo w/Cisplatin and FU5 is a good thing. Still, girl, the road will be as it will be, you know. The sky above is likely somewhat brighter. Keep us/me informed on where this road takes you. You are family to us all.

Yes, I do remember other posts. Have you solved the travel/distance complication?

kcass

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

Kent;

The travel/distance complication was solved to my satisfaction.

At my Tumor Board Meeting at Stanford, they were pretty clear that my cancer, base of tongue with mets to lymph nodes on both sides, was in an uncomplicated location (ha, relatively speaking) and the treatment was very standardized. It was not necessary to travel to Stanford for treatment. Stanford is calling the shots, and spoke extensively with the Radiolgist and Oncologist at the new Regional Cancer Center in my home town. Apparently this group has a very well known dosimetrist and physicist, and the team has had excellent results with the ten head/neck cancers that have come through in the last year. So, Stanford was satisfied to delegate the treatment to my local cancer center, which is 15 minutes away. Big relief.

Deb

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

So very happy for you, Deb, with the logistics working-out as they are for you and the 15 minutes, and that you've got the Folks at Stanford overseeing it all= the best of both worlds. Everything, therefore, is in place, girl- all systems go.

Of note- where I was treated is the Regional Cancer Center of the Quad Cities, located in Bettendorf, Iowa. Could they be part of the same network of C centers? Does make me wonder:
www.rccqc.com/ gives you their website, if you look on Google. All of the people there, in the QCA, were great to me- awesome. Just did a quick Google search, and Regional Cancer Center brings-up sites all over America. If they are the same- would be cool if you give the names of Chitneni and Rajput to your people, with my praise. I was on the ropes for awhile in my fight, but they were all there with me, Deb. I trust your people will give their best effort for you, as you must. As I have won the battle, Deb, so shall you.

Believe

kcass

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

I was reading about the toenail loss. I wouldnt mind that at all, I have toenail fungus in all my toenails so if they drop out I wont miss them! Though they would probably grow back with the fungus!
Keep up with the eating Deb. I havent had surgery yet, but I have been eating soy icecream and have gained 4 lbs.
I have 14 days till surgery! Cant believe I am looking forward to it. I want to get all this over with.
Mary in Northern California

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

PM

kcass

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

PM

Deb

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

Mary,

Hate to say it, but if you have toenail fungus, it would work well for you if you did lose the nails - easier to treat the fungus that way, I read. I didn't lose any nails, but just a few weeks ago, my fingernails started splitting from the base - so they're fine at the tips, but flaking, splitting near the bases.

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

Good Luck to you!!
I will be keeping you in my prayers. I just finished 35 rads last Thursday and Amifostine course (I accidentally first typed curse, which is probably more appropriate)as well as severe neck burns and the joys of home debridement..you, some Lortab, bright lights and a good magnifying mirror.
After getting down to 90 lbs, yesterday I was able to eat a bit of hot dog (I know bad nutritional choice) and it tasted like a hot dog..brought tears to my eyes.
You will get through this. This site is so helpful..
Wishing you well,
Stacey

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

very best of luck to you. stay strong! we are all pulling for you. here's praying for mild side effects.

ratface's picture
ratface
Posts: 1231
Joined: Aug 2009

"it's going to change you in bad ways for the rest of your life" Please rethink this philosopy.Yes you have been hit by the perverbial bus but there are some positives. Lets not dwell on those right now. You will find them in due time and they will be personal to you. So pick yourself up and ride that damn bus into treatment and your mind will carry you far.

May you prevail through treatment on the wings of angels and far from reach of that damn bus!

ballonk's picture
ballonk
Posts: 54
Joined: Mar 2004

Sending warmest wishes and hugs your way and you continue on your journey to wellness. I love the saying "Shut up and get to work"! I will remember those words for myself!

Fire34
Posts: 350
Joined: Feb 2010

Deb
Best wishes and hope things go well>
Dave

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