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Boy, the last three days were a surprise

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

As I've been recalling I have just started Induction Chemo. Had my first treatment last tuesday and took the pump off on Friday. Since then, everything has been way downhill.

Seems I have a bad case, but a very normal set of side effects. Turns out all the anti-naseau drugs they have been giving me tied me up with a bad case of constipation making it impossible for me to put anything in my stomach. Add to that, that the the lining of my mouth is scraping off (effect of chemo killing the quick growing cells) which has caused me to produce massive amounts of mucus. This slime then goes on to produce thrush (a yeast infection that goes all the way down my throat). So, here's the pretty picture. All this mucus gets produced and starts to slide down my throat where it meets up with the raw skin from the yeast infection. Add (a) to (b) and you can't swallow and wake up hacking your guts out.

Thanks to my sister-in-law i've learned the blessing of swishing out my mouth with green tee and they gave me a bunch of drugs to try and get everything else under control.

So, here's the question for you guys, probably same one over and over, Is this just the beginning? If so, that's ok, I hate surprises. I would have much rather the staff gave me some clue that things might turn ugly in a heartbeat. I understand why they don't, don't want to scare or give suggestions that might come true. But, in my case, I was really scared. I had no idea why I couldn't eat. I had no idea why I couldn't swallow. I had no idea what this lump was in my throat!!! They tell me that I should get some relieve from the thrush tomorrow and the constipation. Can't come quick enough I've lost over 10 lbs in less than 5 days.

ditto1
Posts: 634
Joined: Mar 2012

I am 8 weeks out of treatment, BOT stage IV, with multiple lymnodes. Treatment 33 RADs/ 2 Cisplatin and 9 Erbitux. I can tell you that yes its a rough road but hard to predict just what you may or may not deal with. Lets hope less side effects in the long run even with a rough start. I told my wife I think the Thrush and Constipation are tougher than the cancer, but in fact I just now finishing treating my 3rd thrush, constipation picks and chooses but I have been proactive in taking meds to ease that issue. I know the Cisplatin kicked my butt within about 5 days of getting it. Hopefully you are not needing RADS but if you are, I found the RADS tougher than the Chemo. Not sure if any of this helped but many others will come and offer their thoughts as well. Either way if you are new to the site welcome and sorry you had to find us, but I and many others find this site as a major blessing and help in getting thru this treatment process. If your a veteran to this site then you already knew that, So God Bless you and you will be in our prayers.

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

I'm pretty much a rookie. But I will need Rads down the road, I just need to get there first. The Thrush is kicking my butt. I know if I could get past it I could eat (and sleep) and then move on. Hoping tomorrow is better.

Thanks

Joe

nick770's picture
nick770
Posts: 195
Joined: May 2012

You have lost lots of weight, do you have a feeding tube? You need to also stay hydrated.I'm sorry things are rough for you but hang in there and keep the positive attitude

CivilMatt's picture
CivilMatt
Posts: 3083
Joined: May 2012

jcortney,

I can’t remember and I am to lazy to go look are you having rads and chemo (and what type of chemo)? The coming attractions are highly dependant on your answers. If we didn’t warn you about constipation, we should have. I had it so bad once…never mind. It is important to keep the nurses and doctors informed on all side effects, they do have solutions,, they just wait until you have the conditions before revealing the answers. Keep drinking fluids and swallowing it will pay dividends eventually. Everything you are going through sounds pretty normal. There are more side effects, but I hate to let the cat out of the bag without knowing your treatments

I’ll be back.

Best,

Matt

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

Series of three sets of Induction Chemo followed by Chemo/Rads (not big on my radar right now). The Induction Taxotere, Cisplatin and for the life of me I can't remember what was in the pump they had me on for five days. At the end of the fifth day they took the pump off and then I go on 17 days of rest. Then start it all over again.

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

I'd say that you have had a pretty hard start.

Most people do not get hit so early with what you have. So in all honesty, what we always say..."everyone is different" is applicable.

So that being said, it's really har to say if it'll get worse through this battle of chemo.

Anyways, sorry the first week was tough, but on a positive note.., you are in recovery mode for two weeks.

Hang in there, stay hydrated, and communicate with your MD's.

John

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

mucous and thrush are pretty standard, although the causes can vary.

I got the gift of mucous (and vomiting) mostly from rads, and thrush was a side-effect of antibiotics for a staph infection. I hate antibiotics, grrr.
so we can relate, even though we're all a bit different.

with nystatin or other drug, the thrush should get better quickly. the mucous might take more time, especially if you end up getting rads.

best wishes.

phrannie51's picture
phrannie51
Posts: 3847
Joined: Mar 2012

somebody is in for a mouth full of sores....I can't help but think it's 5FU in that pack, and that's exactly what it did to me...stripped my mouth of a layer of skin, leaving hamberger in it's place. Get some L-Glutamine, so you can swish AND swallow, getting some much needed hydration. You don't want to get dehydrated when you feel this punk, or you'll really be in a world of hurt. I also swished with the salt/soda mix....neither the L-Glutimine or the salt and soda stung....EVERYTHING else did.

Constipation is a big problem all thru treatment, even when you're not taking the anti-nausea meds....the diet of Ensure and Boost contributes to it, also. I'm still having a time with constipation, and I haven't had an Ensure/Boost for almost two weeks. I take 3 Colace a day to combat it...I'm wondering if constipation will be another "gift" from treatment.

For thrush I took Diflucan...it worked better for me than Nystatin...thrush is hell on wheels, and I do feel for you suffering the sores AND thrush AND the mucous all at the same time...I think once you get to get rid of the fanny pack, you'll find chemo easier.

p

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

re Boost and Ensure...I have the opposite problem.
liquids in, liquid out, lol.

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

The pack is gone. And it was 5FU. Right now, this instant, chicken Ramen is my big friend. Can't eat much of the ramen, but damn does that broth taste good.

Thanks for the heads up on the meds. Something they gave me (fluconazole) knocked me for a loop. I wish I would have read the info sheet first (probably would't have mattered) but this is some bad stuff. Within 1 hour I was having my first uncontrolled heaves of the treatment.

phrannie51's picture
phrannie51
Posts: 3847
Joined: Mar 2012

it's to cure it from the inside out, rather than the topical Nystatin. I never had any trouble with it, I'm sorry it knocked you for a loop, as it worked so well for me on that nasty thrush.

As long as you have found something you can ingest, even if it's just the broth, that is good...it's nouishing, and it is liquid (hydration)...the first time I got mouth sores for the 5FU, I was caught by surprise too....couldn't take anything in by mouth at all...and ended up dehydrated. That was the sickest I ever was during all of treatment, so do take care and drink all you can in whatever form you want it :).

p

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

No sense beating around the bush...yes, you have normal symptoms ...yes it will get better, yes you seem to have a bit of an early start than most..but you may improve before others too.

I lost 70lbs during treatment. I had a feeding tube and started using it fully about 5-6 weeks into rad. I had TERRIBLE constipation (wonder if that is where my hernia came from I found out I had last week). I had terrible pain and a couple of bouts with thrush, mouth sores....you can look at the pic of my neck on my expressions page....Erbitux really beat me up as did radiation (I only had Erbitux and rads for treatment).

So hang in there my friend...the bottom line is your gonna do whatever it takes to become NED!!! :) and I whispered a prayer things go up from here and you heal quickly!

Best,

Tim

hwt's picture
hwt
Posts: 2002
Joined: Jun 2012

Like you, I got hit much sooner than expected with the nasty side effects. I will say, short of the sores on my lips, the majority of my side effects were short lived. Seems I would just have one side effect clear up only to get a new one. Like Tim said, the end result is worth it. I'm just about down 50 pounds and finished tx mid-May. Stay hydrated and stay on top of your nutrition.

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

A few days, lots of conversations with my caregivers, and I might be coming out of this a bit. Still haven't quite made it to solid food but milkshakes and smoothies are working. Clearly, the pain in the throat from the thrush is still there but I think getting better. Found out an amazing thing last night. Was looking through the fridge for anything that might clear my mouth out (flavor, texture, crispness) and saw an old bottle of Gatorade Blue. Stung like hell but man did that clear out my mouth (and throat). So, I'll live with this and keep trying things to see what solid I could possibly get down. Man do I want a corn beef sandwich on rye with russian dressing.

Thanks folks.

J.

phrannie51's picture
phrannie51
Posts: 3847
Joined: Mar 2012

You sound like me with that talk of a corned beef sandwich...ON rye.....WITH Russian dressing....I am a food junkie these days....I don't just think of having a sandwich, I think of every detail of that sandwich...when I make it in my head...ha!!

p

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

I just made the best (so my kids tell me) apple pie from scratch...just wish I could eat it. They all laugh at me now because I can't eat but I have started cooking some wierd but great foods. Cinnamon rolls with maple frosting (add a bit of coffee), bread puddings and now a pie.

Excuse me as I pat myself on the back.

cureitall66's picture
cureitall66
Posts: 879
Joined: Aug 2012

Hope all is going well for you.

You are little close to loved one's dx, also starting tx about the same time. We are three weeks into tx and experiencing similar issues. Can you give us an update on how your doing?

It's a rough ride....but we'll all get through it one day at a time...

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

Sorry I haven't posted here for some time, been doing time writing a blog. You are welcome to view it here:

jcortney@blogspot.com

As for how things are, just finished my second round of Induction. While not a walk in the park, it was far from the nightmare of the first round. Knowing what to expect and how to treat the bad crap made a big difference. Still had a mild case of Thrush even with proactively starting medication on the first day of Chemo. One thing I learned this time was it is very difficult to tell the difference between gastric distress and hunger pangs. My guess is most of the time (for me in this round) it was hunger pangs that I didn't recognize properly.

So, eight more days and the fun begins again.

Almost forgot, here is what is really important. No sign of my tumor and ALL of the swelling in ALL of my lymph nodes is gone. Pain level 0.

Best to you and hope all is working out.

Joe Cortney

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

Glad you have no pain also. Sorry about the thrush, ugh I kept getting that too and it's horrible.
So how did you get the news about no sign of the tumor? I had to wait for 3 months after treatment until I could find out. Longest wait of my life I think.
Billie

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

No un-official sign of the tumor. The induction (the Doc told me last week that he was giving me the strongest Chemo he gives) is designed to shrink/eliminate the infected tissues and to catch any free ranging cells that may have escaped the encapsulated area.

So, in my case my lymph nodes have shrunk to completely normal and, looking visually with a scope, no evidence of my tumor. Also, I went from a 5-8 on the pain scale to a zero. I do this one more time then on to traditional Chemo/Rads.

J.

phrannie51's picture
phrannie51
Posts: 3847
Joined: Mar 2012

shrinking....gives ya a boost knowing that all this treatment is doing it's job, doesn't it?

I jus lived on Ensure and Boost during the last three months of chemo...I knew my stomach was crying for real food...LOL. I spent nights up reading cookbooks and watching the Food channel...planning on everything I was going to eat when I finally could.

p

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