I just wanted to follow up and let you guys know that I started treatment today! I had the big bag of cisplatin and my first Rads. Was pleasantly surprised at how quick the Rads treatment was! Got all the anti nausea meds and feel good for now, although I know it will likely hit me hard soon. What did everyone else experience as far as the first week after cisplat? I'm armed with all the usual nausea meds at home, and I know everyone is different, but was curious for some opinions on what regimen worked best for others? Have a feeling I'll be spending a lot of time on this site in the next couple months :-). I've been thoroughly enjoying Hellion's post -- you are so brave!,,

I felt fantastic Day 1. I felt like I was going to catch a cold on Day 3. Then I got better. Everyone is different but I tolerated the chemo very well.

Stay hydrated and get your calories every day. Stay strong.

great news. one day closer to being done!

The radiation effects usually begin after the 2nd week, 10-14 days of starting treatment, beginning with neck redness, and radiation continue to work several weeks after treatment completion, and have acute, and long term toxicities. Chemo effects start much sooner, usually 3 days after infusion, but cease sooner after treatments are completed. I never had Cisplatin alone, but did with two other chemo's in a high dose induction cocktail, which didn't go well. With radiation, in other subsequent treatments, I believe I had more nausea from pain meds, mucus, canned nutrition from tube feeding, bad taste than anything else. I tried a number of anti-nausea meds through the years.

With Cisplatin, maybe you already know, there are several toxicities that may or may not occur, but if they do to let the staff, oncologist know right away for any neuropathy, hearing, and vision changes, which can become permanent, if not addressed. The creatinine, blood count will be checked weekly in the blood test prior to infusions, and adequate water should be consumed after infusions to flush the kidneys.

The key to getting through treatments are Adequate nutrition, hydration, impeccable oral care, mucocitis, infection, pain, nausea, and vomit control and treatment, neck care, mouth exercises, sleep.

Good luck, and hope this helps.

Truthfully rads issues get worse as time goes on... chemo - welll - that depends on the person. I had minor nausea for few days and that was it. I followed the meds exactly as prescribed and think I only used my breakthrough nausea med twice.

SO glad you are doing ok.

take care

Its day 3 and im doing ok, much better than expected since everything seems to make me nauseated. Ive been able to keep the nausea mostly at bay with decadron, zofran in the day, and ativan at night. I have no appetite but am forcing protein/smoothies down anyway. Hopefully the rest of the week stays as smooth. Im curious, of those of you in treatment now, how many have PEGs? I opted out for reasons Im sure I dont need to explain to this group, but am starting to doubt my decision and was considering getting one placed next week before the hard-core swallowing difficulty sets in. Thoughts? Experiences that may help me decide? Thanks in advance!

Glad you are holding your own, so far. As far as Peg Tubes, as we formally call it PEG Wars lol. I didn't have one when I did induction chemo in November 2009, but did eventually need after being hospitalized for a long duration from that, and being NPO. I had the peg taken out when I was NED 7 month later, but had a recurrence, and my swallowing was still compromised, and another was suggested to be put in, and did, which I still have, and used during several other treatments through the years, and still lost 40 pounds with my first radiation, and was tube dependent for that, but not any others.

It also depends if the person is already compromised, eating inability, having invasive surgery, is underweight or not going to be able follow the proper nutrition, hydration, and mouth exercise regimine that one may be suggested to have put in before starting treatment. It seems these days it is favored by some doctors, and even patients, to have one put in reactively, than proactively, and some not at all. There are pros and cons to each.

Keep up the good work, Doctor.

Thanks, Paul. Of course this afternoon I feel awful and not much is helping. Got my 3rd Rads (25 mins away which sucks) but otherwise it's hard to even get out of bed. I know it's just a bad day, but man this cisplatin is unpleasant. I keep trying to remind myself that the symptoms mean the med is also melting the cancer. Anyway, will hope for a better day tomorrow, and make PEG decision next week. Thanks for the input!

Ask your doc for an open prescription to get hydrated in the chemo lab. This will help you to feel better.

If your daily intake isnt at least 2500 calories and 48-60 oz of water, then you probably will struggle thru your treatments. Its very early in the game to run into any problems, but everyone is different. Some can have problems from day 1 while some other lucky patients sail right thru without hardly a bump in the road. The common denominator is patients who have it easy are the ones who focused on getting their daily minimums in no matter what. I cant stress this enough... it really will make or break your treatments if you can or cant get the daily minimums in.

As far as the PEG goes, its a very personal decision. Many are pro while others are con and think most can get thru it without one. The PEG wars got pretty ugly with each side being adamant on over-stating why their way was best. Its a tool that will make things easier in many ways if its used correctly, as a supplement to eating/drinking. Whatever is best for you in yoru situation is what we will support you with.

Best wishes!

Laurie, I didn't have chemo so can only comment on radiation. I elected not to have a PEG and my MO told me she thought I could get through it if I really wanted to. I had my reasons for not wanting to go through another medical procedure at the time.

However after a few weeks I began to wish I'd had the PEG. Swallowing became so fiercely painful due to mouth and throat sores that I almost couldn't do it after about 2-3 weeks, and this was only liquid nutrition and water I"m speaking of. Of course maybe since I've always been prone to canker sores I was more sensitive than some.

So you're right to consider this carefully and get all the advice you can. Oh and like you I had a bit of drive to the ride every day, maybe 40 minutes that I did by myself. And in LA no less. But the end result is worth going through anything.

Hang in there, keep writing, keep eating, keep sleeping!

We're all here for you.

Oh Laurie. Its like a veteran looking back on a recruit! I have the smiling selfie I took the first time they strapped on the Cisplatin. I had no idea. I started at the same time as Hellion. We're coming to the end of week 6, I'll share a few important points from my experience.

When people tell you what to expect, words like nausea and constipation are just words. You look back on a time in your life when you were nauseous, you're thinking seasickness, maybe a hangover. Nothing prepares you for 8-9 days straight of it. But it won't kill you. As long as you can medicate yourself orally, and get enough food and water down, the unpleasantness will pass. It doesn't feel that way but it does.

Constipation can be a very serious problem. The change in diet and the painkillers meant I didn't poo for 7 days. It backed up so far it made me nauseous to the point I couldn't medicate or hydrate orally anymore and had to be admitted to hospital for 4 of the worst days of my life. I seriously wanted to die. When the doc says take Movicol, take Movicol (or whatever it is called there) no matter how vile it is or how nauseous you are.

Other strange things will be happening to your body that your previous bodily experiences won't prepare you for. Keep ahead of the game with oral hygiene, mouth washes 4-6 times a day and sorbolene on your neck 4-6 times a day now, not when you start noticing it go red. I can thank my wife for rousing me into doing those, I'm doing ok with those now. Keep ahead of the pain relief, being a Doctor you'll understand titration a lot better than most.

I take on board what Paul and Christine are saying about the PEG wars. When I was hospitalised with constipation and lost 15lbs in a week, I thought a PEG was inevitable. I spoke to the Doctor this week and he said no. A PEG is a whole different level of care and attention you want to avoid if you can. He said hold on to normal as long as you can. The longer you can maintain normal swallowing and normal food the shorter your recovery will be. But the bottom line is you must get the calories down somehow. Your situation is a bit different because you have had surgery, I don't know how that affects your swallowing.

Cisplatin causes tinnitus and can lead to permanent hearing loss. If you have any tinnitus be sure to mention it to your Oncologist before you get your next dose. Hellion was taken off Cisplatin because of it, mine noted it but didn't consider it serious enough to stop the last Cisplatin hit next week.

Every cancer journey is different. Hellion and I, same age same cancer starting the same treatment at the same time have had very different experiences. We've both had some very tough roads and we may not have seen the worst of it yet, but we are getting there and we will beat this.

If you decide to not get the peg tube now, there are other options later. Some patients will try to tough it out only to struggle when it gets really difficult, at the end. You can at that time get a nasal tube which works great as a temporary aid. It does not require surgery to have it placed.

Thanks all! I feel better today. Nausea is mostly controlled and I'm forcing the cals down. The liquid is no problem. It's just so damn hard to eat when nausea is tellin u no! But I absolutely get the importance and I'm on it! After these posts am inspired to go a bit longer b4 peg. Like some others, I am loathe to undergo any additional procedure. I also have a negative mental factor. In my job I work w small hospitalized children who are mostly chronically ill, and they all have G tubes due to inability to eat due to brain damage, or destroyed GI tracts, or whatever super bad thing. So in my mind, Gtubes do not have a good association! However if I need it to save myself, I'm willing. Took a couple weeks to wrap my head around that one, but I'm there, if needed. Anyway I'm off to attempt a shake! Have a great day everyone; am so happy for OzMojo and Hellion who are almost done! Congrats!! The way I look at it, tomorrow Im 1/6 done, and Im already 1/3 down on chemo. Not bad!

Glad you're started and doing well! I would hardly call myself brave -- I've vocally complained my way through every step of this process . I came to this forum to be able to do that anonymously and still preserve my rough-and-ready image in the real world!

None of you guys would know to see me on the street that I'm THAT whiney Hellion and none of the people I know in real life would ever know that I whine so much about this! It's a pretty good deal.

I had the PEG installed at my care team's insistence and I resisted using it but have hit segments where I was glad it was there. Some of the mouth sores, even with rigorous care, made eating prohibitively difficult and I was glad I could supplement my intake with it. When the thrush was terrible, I was unable to comfortably take even ice-cream smoothies orally.

That said, I am in no position to advocate for it -- I listened to my team's advice because I was worried that, despite being a mean, stubborn SOB, I might reach a point where I couldn't maintain my intake orally, and I was unwilling to do anything that might jeopardize my schedule. If I had to have it installed during treatment, they said I may have to postpone treatment for a short period while they did it and I decided that was worse than the alternative they were offering me.

Those were my reasons -- I don't want to argue with anyone here about it -- just explaining why I let them do it. This treatment is different for everyone -- i hope you never have ANY occasion to need the tube -- certainly many people manage without it.

Good luck, stay strong, keep us posted!!

The Hellion

What's old may be new again! Here is a new article regarding proactive head and neck cancer nutrition, via home enteral nutrition support, being revisited. You may have to register to read medscape. Peg wars continue lol.

http://www.medscape.com/viewarticle/824917

What PEG war! I laid down my arms and now a pacifist. Don't get one until you need one. Pretty simple. :-)

That's true in some ways - and those who know me - know I am in no way an advocate for the peg. I think it has both benefits and detractors and is very much a personal decision. The problem with waiting to get one "until you need it" is that by that time you may be malnourished and dehydrated and that can have a serious impact on healing and overall treatment. Not everyone realizes they are slipping down the rabbit hole until the knock themselves out hitting bottom - at that point they may have no choice but to stop or delay treatment to get back on their feet -this can be detrimental since treatment if possible is most effective when given with no breaks. ( immunity and overall health = nutrition )

I personally didn't want one. My dr. insisted. I had it in, couldn't use it, did the by mouth thing through treatment and had it removed two weeks after treatment was over. Small scar. No real pain.

It really depends on the person.

hugs.

Don, I always got a kick out of the term when I first heard it, "Peg Wars." It was long before me, and I came on at the back end when the dust settled. It's probably just as old as the Hatfield's and McCoy's lol.

"Peg Wars" created more activity than religion and politics together!

Whatever floats your boat. Personally - I like to be prepared for "unforeseen circumstances".

When my husband got his peg tube, he was asked to first swallow the "lead" -- something that's going to be hard to do when the throat and mouth are really sore.

Well I am two weeks done (yay - 1/3!!) and am still doing well. Lost a few pounds during chemo but think I have stabilized this week. I know the sore throat will come next week, and am prepared for the PEG if need be, but for now am holding out. Bummer thing is that my taste is already all messed up (not gone; i say messed up b/c I don't know how else to explain it!). Sweets are still ok but anything salty/crunchy is like eating cardboard since I can't taste the salt. Anyway, forcing down what I have to and trying to hang in there as long as possible. Here's to being 2 weeks done, and to a reasonable next 4. Thanks all for the input as always!!

The time goes really quickly with this sort of treatment gobbling up the days and weeks. I'm just about through and don't know where the time has gone. It will be so nice to say goodbye to the mask on Monday and to one day taste savoury things again.

Good luck with the rest of your treatment and may the days fly by.

alpaca, you must be done now! Congrats! Cannot wait to be in your shoes. The loss of salty taste is about the saddest thing ever! Not really - but you all know what I mean. I keep reminding myself that cancer cells are dying with those taste cells! Anyway let us know how you're doing!

Yes, I'm finished, feeling a bit blah and sitting here at 9.32 am in my dressing gown. I've been warned countless times that the radiation keeps working for two weeks so that's my goal now. I crossed the treatment days out in black pen and will use a red pen for the 14 post-treatment days, knowing that it could take less time for my energy to return. Unfortunately the taste buds don't recover for a month, the dietitian told me. I'm getting used to no taste though and find the Fortisip (like Ensure) milkshakes quite soothing on my mouth. All is not lost!

Wishing you well. The time will pass before you know it:)

Good for you. Sounds like you tolerated it quite well overall. I am unfort already struggling with mucositis, but have been able to get my shakes down so far, with the help of Magic Mouthwash Let us know how your next couple weeks go!
Wishing you all the best for recovery!

Laurie, I found that viscous lidocaine was essential to helping me get the liquid nutrition down. Assume you've got some or have considered it.

And Alpaca: congrats! I wish you the best in your recovery and will be sending healing thoughts down your way.

Congrats on finishing your treatments!!!!

Time to rest and let your body recover now. Keep pushing yourself with the higher calories and hydration every single day until at the least you hit the one year mark.

Best wishes for a speedy recovery!!!

Alpaca... hon... sadly your dietician is misleading you. Your taste will return when it's good and ready and probably has it's own time table. You may get some taste within a month but truthfully it took me a lot longer to recover my taste and my sweet is still not operational - though I get hints here and there. For me the least horrible tasting (even now - 3 years out) is natural foods. Processed foods taste a lot like the crap they put in them... essentially chemical stew. Horrible. Pop is disgusting even now. So be patient with yourself - it will take some time. HUGS.

Here's a ringing endorsement of Cheryld's comments on the return of taste.

I've had a smorgasbord of Chemo agents, and the one thing I found that all had in common was that they mess with your taste. Beyond that, the taste-function that is working often mangles the flavors it does detect, and overall, the return to normal can be VERY slow.

I completely lost my sense of taste back in '09 when I was getting Cisplatin. It had only returned to about 50% by the time my first recurrence showed up and was treated with a cocktail of Carboplatin and Taxol (later changed to Taxetere to preserve my diminishing hearing - all chemos I've experienced also take chunks out of your hearing also. I found that many of the flavors that I'd recovered were now gone again.

I don't mean for this to scare you, just the opposite. I haven't had any chemo for about a year now, only forms of radiation, and I'm probably back to nearly 90% in the taste area. However, some flavors, steak especially, (still) fade away before I reach the end of the portion I'm eating.

The good news on that is that even those flavors are fading later in the process so I expect full return in time.

But some flavors seem to have returned markedly changed; and others (like high fructose corn syrup) have become strong enough to over-ride whatever artificial flavoring agent they use (e.g. pancake syrup's fake maple flavoring) and, while I never detected the HFCS previously, I find I cannot stand it today and that ruins anything sweetened with it. Overall, that's a big PLUS for me!

I used to live fresh, hot french fries. They have lost their appeal entirely. Win!

As Cheryld said, fresh veggies were among the first flavors to fully return to detectability, they have remained unmodified and do not fade. Fresh fruits the same.

So in the final analysis, taste return at its own pace and not always completely; but the upside is that it seems to favor healthy real food over junk.

Overall, not a bad deal in my book. Your experience will vary in the details and fine print, but I think if you can keep your sense of perspective, you'll find this more a minor annoyance at worst, and even a beneficial one at best.

Good Luck,

Bart

How are you going, Laurie? I didn't have chemo which will explain somewhat milder side effects. I had Cisplatin and Taxol nearly 20 years ago, however, and can't remember my taste buds going. I put on a lot of weight because of the steroids I was given and had a massive appetite. But alas the radiation has knocked by sense of taste for a 6 (cricket metaphor) Some taste for sweetness has remained and I don't know if I can read too much into it but I have started putting tinned fruit in my shakes and can taste it. Tried some passionfruit yoghurt and think I tasted the first spoonful. After that it was vile

As Bart and Cheryl say, it will be GREAT to taste fruit and veges again. After surgery I was in love with mango lassis and pumpkin soup.

All the best for this week.

My taste and saliva, which I think go hand n hand, didn't start to return until my 4th month post Tx. It was a small improvement but at that point it signaled the beginning. I saw a tad more improvement in my 5th month, then nothing more until my 14th month when I saw the biggest change and then a tad more at 24 months. I estimate I'm 90% of pre Tx taste a nd saliva but that's really impossibl;e to pin down because as soon as you loose your taste but forget what 100% was like.