Hi all,

Some of you saw that I posted my first fee treatment items in introductions -- I didn't have a lot of strength to reorganize my thoughts but wanted to get down some impressions and questions somewhere. Moving forward, I will try and do this from this branch.

So where to begin? Best, I guess, to catch everything up.

I started treatment on 3/27 with a rad to the head followed by the big dose Cisplatin later that day. Because I worried about the potential for hearing loss, we ended the day with several comprehensive baseline hearing tests. In general, I felt pretty OK about the treatment. Took on over 100 ounces of water and felt I was being ver proactive about doing my part. As they told me Day 1 wouldn't be too bad, I optimistically woke up, drive to work and sat down to out In a good 6 hours before Rad 2. Bad idea for me.

Even with the anti-nausea pills, the day after wiped me out and I was soon in near tears, alternating between waves of nausea and fitful sleep. Managed to get it together enough to get in my car and get home, took a nap and had my wife drive me to the rad.

OK, so much for that. So let's take it easy, I think. Saturday, the day it's supposed to hit pretty hard, goes OK. I can't eat anything, but I manage to keep down a lot of liquid and am feeling pretty good about myself. Weak as kittens, but on my feet (sort of -- I still sleep 2 hours at a time for every hour I'm awake).

I arise Sunday optimistic that I'm going to hold this thing together. Sunday I make the conscious effort to take on food and continue the 60 so liquid regimen. We make a smoothie and over the course of the day I manage to get it down. By 1500 it's a huge mistake. Incan't digest it, move it, drink anything, etc. the nausea and vomiting start up and I'm starting to freak out. So...we call down to the oncology department and they get me into the ER for a couple of bags of fluid, some more anti nausea medicine.

Not feeling particularly proud of that performance, but they did tell me it wasn't off the course for the first chemo. The event has soured my mood a bit, as I thought I could simply rise above any difficulty, but it also reminds me that I have to pay attention and do the right thing, even when it makes me feel weak.

My lovely wife sat with me through the entire time despite me being so exhausted as to be semi-lucid. She's the real strength!

Staying home today, hoping to recover. I am already down so many days at work, I 'm not sure how I'll get back to it when this is over. Tough to believe this is only the beginning, but I'm more determined ever to hang tough - I didn't put myself through chemo hell to quit now.

Thank you for your kind words and advice! The nausea is really a killer at every angle for me, but I know we all know it will be. Mostly, thank you for your lent strength. I know so many of you have done this, and made it, it helps me to know hat I will too.

Here's hoping today goes better than yesterday!

The Hellion

Hi Hellion, as the gastroenterologist explained to me, the nausea that one feels during chemo treatment has nothing to do with food or liquid intake, it is the central nervous system reacting to the chemo medication. (John cannot swallow at all and I was worried that he wouldn't be able to throw up if he should be hit by nausea during his drug trial.) Taking the anti-nausea meds when you feel the nausea coming on is better than waiting until you are actually throwing up. Get ahead of the nausea.

Sorry to hear the road got a bit bumpy. Some of us are more prone to nausea than others. We used to have a comment about "polishing the teeth from the insdie" regarding the violent hurling some of us did.

I believe I went through at least 10 different meds before finding one that worked. Many of the ones used today were just being used back in 2003. Don't be shy in trying any until you find one that works.

Make sure, especially with Cisplatin, you notify the doctor regarding any changes like hearing, vision, urinating, etc., as dehydration from vomitting will exacerbate things quickly. I am glad they got you into the ER and put some fluids in you.

Best wishes for a good day today...and every day!

I am sorry you are not feeling well. The last chemo I had knocked me on my butt too. But that was my fourth one. There are many different medicines they can give you to help the nausea. Don't be shy with your doctors. Tell them everything you are experiencing and they will help. Feel better soon!!

My first week of chemo infusion, Taxotere, Cisplatin, and 5-FU, in 2009 turned out to be disastrous, near deadly, and put me in the hospital/hospice for 6 months, paralyzed and blinded me, and postponed my curative treatment for over a year, which wasn't planned on happening anyway, but I'm still here, and had numerous treatments thereafter, which was nothing compared to what I initally went through, and why they threw the kitchen sink at me since. Hopefully you went through your worst, and only thing after hitting the bottom it up! You can do it!

It's common for most of us to decide early on that we will be the super strong, succeed at any cost, triumph over this by shear force of will kind of patient. And that works great until the really bad side effects start happening. And that's when the experienced road warriors advice starts to have meaning.

I have read time after time, that when it gets the roughest is when we start thinking in shorter time periods. All I have to do today is get through TODAY. I'll worry about tomorrow ... later. Sometimes it gets down to I just need to get through the next hour.

If it reaches that level, don't feel bad, don't think of yourself as a weakling or a wuss, you're just going through your initiation into the road warriors.

Hang in there, you'll get through this too.

Tony

Well and truly said, Tony! Thank you for all of us!

Bart

Im so sorry you have been struggling!!! Most of us have been down that road and its not easy at all. I have a tip that may help but I need to advise you its a bit gross.

For those who have a feeding tube and are dealing with throwing up, there is a trick I learned by accident. This works especially well when patients have super sore throats and can barely swallow a sip of water. Its unimaginable to think about puking when your throat feels like its full of razor blades. Go into the bathroom and lean over the sink and open your feeding tube. This can very quickly remove whatever you were going to throw up without it having to go thru your throat. Just remember whatever you lose needs to be put back in. This can easily become a vicious cycle leading to dehydration. If this is something you are going thru, ask your doc to write a prescription for hydration at least 3 times a week in the chemo lab. By taking a little extra time to get a couple bags of fluids can do wonders and help the patient to feel so much better almost instantly.

Hellion, I hope by now you are feeling a little more like yourself. We are in your corner thru this whole battle.

Best wishes!!!

ditto!

Thank you all for the support. I am feeling, in general, a bit better overall, but I was pretty worried there for a few days. To say I felt shaken is a bit of an understatement. The overall feeling was kind of rough between the pain of the tumor in my ear, the nausea, the constipation, and the overall sense of exhaustion, I felt like I was on a pretty ragged edge.

I was hoping I would sail through this with aplomb -- I guess I found out that I am not, despite what I may have believed, a superhero. Alas, now I must deal with it like a mortal -- one day at a time and one issue at a time. I'll tell you who is a superhero, though: my wife. She's been next to me the whole unpleasant time. Guys, I am so ****ing lucky to have her in my corner.

I can't say I feel great, but I feel a lot better. Only two more f the Cisplatin to go, so that's good. Thanks for reminding me that I'm not a total loser for struggling so hard. It can definitely feel like you are when you're laid out shivering, nauseated and in the ER getting fluids while the nurses and doctors gather round to tell you not to let yourself get dehydrated. For those of us that have always gone our own way, always handled our problems by ourselves, this whole thing feels very debilitating. It's good to know I'm not the only one that got his face kicked in by the treatment.

Still pulling myself together, but hoping to return to work tomorrow.

Thanks for the support!! I'll add more after another nap -- naps comprise a lot of my days right now

The Hellion

[quote=TheHellion]I can't say I feel great, but I feel a lot better. Only two more f the Cisplatin to go, so that's good. Thanks for reminding me that I'm not a total loser for struggling so hard. It can definitely feel like you are when you're laid out shivering, nauseated and in the ER getting fluids while the nurses and doctors gather round to tell you not to let yourself get dehydrated. For those of us that have always gone our own way, always handled our problems by ourselves, this whole thing feels very debilitating. It's good to know I'm not the only one that got his face kicked in by the treatment.[/quote]

Hellion, going through Cisplatin and Radiation together was definitely the worst part of the whole experience from my perspective, so you have absolutely no reason to feel like a loser for any reason, especially not that!

I spent the entire time feeling like my stomach was completely full of liquid, sloshing around, and that if I drank another swallow of any kind of liquid, it would bring everything up. Oddly enough, that's exactly what did happen the several times I tested it. My cousin "Ralph" and I had daily communication sessions around the great porcelain communicator, and I lost 38 lbs as a result. I hate to complain, but that was simply miserable.

You're not out of the "Fun Zone" yet, but you can see the egress, and before long, this will only be an unpleasant memory. Hang in, little brother, you're doing fine, you'll make it!

Bart

Don't ever give in to the "I'm a loser" lie. There are simply going to be times when it is miserably bad and you just have to ride through it. As awful as it will be, and it will be, you will come out the other side. Sleep as much as you can. You may not be able to work as long as you have wanted to, it is what it is, but does not define who you are.
And...I am sure you are the hero in your wife's eyes. I remember watching Kevin and being amazed by what he was going through. You sound like you make a great team!
Kathy

I ate before each chemo about an hour before- Cheerios/milk. Zofran if I got nauseous- heaving with PEG devil- uncool! My husband is a body builder. He had me on weight gainer shakes. One shake 600 calories, 48 proteins - max good for you, min intake since swallowing may get worse. Aminos every am on empty stomach All from Bodybuilder.com. Not cheap but easy to get down and max tissue repair. My neck was fried by week 4, completely healed from a visual week 7--I used Aloe and Aquaphor like crazy. Spitting in a bottle week 5-7. Started swallowing again 2 weeks after treatment ended. Forced my self to eat as I HATED the Peg tube even though I was forced to use it- using it was not bad but my husband/sister/mom did all---I didn't do. I am thin so could feel it all the time and am a stomach sleeper- so ...Was super happy to get rid of it only to be traumatized at the removal process....brace yourself. Started at 122, at 114Lbs now and maintaining. Oh, take anti-acid daily, the chemo heartburn gets worse as you go. My Rad Dr. Was shocked at my recovery given how I was by week 5. I firmly believe my husbands prescribed protein routine is the main reason.....and it's stress free to drink 3 drinks a day vs trying to eat several meals to get same protein content,....and eating will become stressful.

Well, I feel better today. Still weak, still occasionally nauseated, but I can eat and am doing my best. Already lost the taste thing, which makes everything gross, but at least largely speaking I can hold it down.

Saw my rad oncologist today. My tumor is putting a lot of pressure on those nerves around and under the ear and it can get pretty blinding. He says he hopes the radiation will start to shrink that soon but that it's too early to tell if it's responding well or not. Anyone have any insight here? I'd like to think that at the very least I won't have to live with the crippling "ear infection" thing the whole time, too. I thought the tumor would already be smaller -- he didn't seem to want to commit either way to that theory.

As always, thank you guys for making me feel better. I can't deny I needed a pick-me-up and you guys did a great job, it really does help knowing other people survived this!

I'm not buying into the loser tab, by the way, but I did fall into the "why am I not as tough as I thought" trap. Thanks for being here!

The Hellion

I think you need to give it a bit more time. When my husband commented on the shrinkage of his lymph nodes about 1-2 weeks into radiation, the RO said that it 'wasn't him' (meaning the radiation), but was probably the cetuximab which started a week prior to radiation. Just as it takes radiation a while to stop at the end of treatment, it takes it a while to get going.

I hope that you will start getting some relief from the referred pain soon. If it goes away and comes back, don't fret too much since as the tumor shrinks, you will have inflammation from the radiation damage.

Glad to hear the nausea is more manageable.
Maria

I also want to second LauraB's post. My husband was dependent on high protein shakes during the second half of his therapy - like Laura, he recovered quickly. The RO was particularly impressed with how fast his neck healed.
Maria

Takes a while for the lymph node to shrink, I think I was in week 5-6 before it started shrinking. But once it starts, it goes down pretty steadily. Having an ear ache during all of this must suck :-/

To add a few comments.

As far as shrinkage, my level II lymph node, which had the similar ear pain, shrunk like Brian PK, over the course of weeks, but mine never completely for a while, but radiation continues to work for several weeks after compltetion, so my RO waited 5 months to do a PET/CT post treatment, and node was necrotic tissue by FNAB.

As far as you would think you're not as tough enough, I can understand that plenty, maybe being similar to you where people came to me for help most my life, and now could not. I was the one to respond, not run away, when others did, though often I wish I could lol, and chemo knocked me out in the 1st round was a wow moment lol.

One thing I remember my doctor telling me years later, "It doesn't matter what happened or may happen that matters, but what mattered is that you are strong enough to pull through that counted."

I also like a quote I often use, "It doesn't matter if you win or lose, what matters is that you put up a good fight!"

So it's been a busy week, and in a good way. Most of the chemo hangover seems to have left me and I'm back to feeling kind of like myself. Still awfully weak, and the mouth/throat has been stepping up the past two days, but very much manageable.

My Chemo oncologist is out of town next week which moves my second Cisplatin back to the 21st. No big deal she assures me, but I will say it's a mixed blessing. It gives me a few days of reprieve but it just puts off the inevitable, too. If I'm entirely honest, the chemo is a bit in my head. I've never felt that bad for that long! Oh sure, I've had injuries that were more painful and for longer periods, but that feeling was kind of complete cellular collapse for a week!

Ah well, nothing for it but to get through it. Been back to work most hours of most days. The wife and I used a day this week to just hangout, watch some TV and enjoy a little sunshine before afternoon radiation. We both felt a little guilty, but as she said, it would be nice to be home together on a day I'm not just completely sick .

Meanwhile, still eating mostly proper food although the taste changes have taken a lot of the fun out of it. The sore throat is intense, but still in the bad cold region, so maybe I have another few days before that gets super intense.

Thank you to everyone here for helping make me feel better last week! This forum is really so valuable -- people like me need to know that we CAN survive the treatment from people that have and that our misery and tears are justified. It is so very soul-searchingly frightening to feel the way that Cisplatin made me feel -- serious questioning my manhood kind of pain. -- so it was nice to hear (even though I knew it was true) that I would get through it and it was OK to feel like a complete baby.

So, again, thank you all. I hope your journeys are proceeding apace as well. Just so you know, I plan to come here and cry into my beer after the next chemo, too!!!! Forewarned is forearmed!

The Hellion

You rock!!

Well, it's been another busy few days. The throat pain, long anticipated and long dreaded started up intensely over the weekend. Swallowing has become a real chore and the inside of my mouth is so sensitive to acid that the only things I can eat must be warm, soft and salty. My vaunted blender is useless because smoothies burn the inside of my mouth and throat terribly.

I'm down to eating one "solid" meal a day, but still drinking liquids throughout to at least keep the throat in as much working order as I can. Man it hurts, though, and I',m not quite halfway through. The inside of my mouth is swollen up, which is kind of annoying.. I rinse continuously throughout the day, and I brush my teeth and the inside of my mouth 5-6 times daily, but given the internal swelling, I may be being too rough and think I will ease up a tiny bit on that. I'm still going to do it, but maybe I won't brush the skin as vigorously. That said, it doesn't appear I've developed any horrible bleeding ulcers yet, so that's good!

Question if anyone knows, though. You know those pouches on the inside of your cheeks, way in the back where your wisdom teeth are? They are swollen on both sides so badly that I can't close my teeth together because they are in the way. Does anyone have any magic remedies for shrinking those down a bit? Any advice would be appreciated.

Meanwhile, Monday is Cisplatin 2, delayed 4 days for my chemo oncologist's schedule, but happening nonetheless! As I told you all already, I know going in that that bastard is going to beat me down, so I think I'll come here and cry behind the screen of anonymity again.

I hope that everyone's journeys are progressing, and I appreciate so much those of you that continually take the time to respond to me and pick me up when I stumble, and remind me that this is but a moment, and a moment that I will survive and, in a weird way, appreciate. I see that this process really does change us a bit, and, so long as we hold dear the satisfaction of fighting the good fight, I think in a lot of ways this will change me for the better. Not the cancer, nor the treatment, but the outlook and experience -- I'm already different since diagnosis and I think I will be different still ere I next taste food properly!

Cheers,

The Hellion

Benedryl helps with inflammation. But be careful cuz at the same time it also dries out your mouth. As with any changes, let your nurse and doctor know whats going on. You may need something stronger like a steroid to help with swelling.

If you dont already have one, get a water pik and use it on its lowest setting. Mix some mouthwash with warm water and get in between all your teeth easily. Use a baby toothbrush, its softer and easier to get in there.

Hang in there. It might be a rough week. But you are also one week closer to being well again.

Look into Boost VHC (Very High Calories) which has 560 cals in a small 8 oz can. I lived on those things totally throughout my Tx and a part of my recovery when I couldn't swallow worth a crap. You don't need a prescrip but you can't find it on retail shelves so you either have to get it through the pharm dept of say Walgreens or Walmart, etc or you can order thru the OCF's Amazon connection.

You MUST maintain appx 2500 cals and 48 ozs of water EACH and EVERY DAY from now until at least the 1st year post Tx.

Hellion, are you making smoothies with bananas? Bananas are acidic and can really hurt. Have you tried making smoothies with avocado? It is very good and also nutritious.

I agree with Gloria. Bananas and rads don't mix. I was off bananas for at least 6 months.

Hellion I was experiencing throat pain too, and switched to softer foods. The dietitian and oncologist both said that it was too early to be doing that, and said i should concentrate on better pain relief otherwise the later weeks will be really difficult food wise.

The doc said to take paracetamol every 6 hours whether I have pain or not, to provide a base level of pain relief. An hour before meals, take an Endone. I'm back to normal food, as long as it has no spices (mayo tastes like battery acid!). Plus I have to be extremely vigilant flossing the back teeth (on the side that still has back teeth) otherwise I quickly get swelling there. I'm not sure if that is what you're experiencing.

The stomach is still unsettled, and leading into round 2 Cisplatin on Monday I'm still having to manage that with Pramin but the doc gave me some Stematol today to see if that works. Stay strong brother I am right there with you and we are 3 weeks down! Only 4 to go.

Hellion,
I located a SpongeBob Squarepants child's toothbrush that was soft and small enough for my husband to use. I believe the other choice was Sleeping Beauty. Bob's smiling yellow face added a bit of cheer to the bathroom. I believe that he also used some actual sponge mouth cleaners as things got more problematic. Please don't rip up your mouth cleaning it overly enthusiastically.

Don't be shy about discussing all / any issues with your RO / ENT or their nurses.

I am glad that you are getting the second Cisplatin in. Staying as close to schedule as possible with the rads and chemo increases your chances for a cure.

All my best to you and others in treatment!
Maria

Hellion, we followed CherylD's advice and bought a Waterpik. Use the tongue scraper attachment on low with lukewarm water and a bit of the magic mouthwash. My husband did it several times a day. He actually remarked that it was the best thing we could have got for helping him through treatment. It loosened the gunk and left his mouth feeling fresh. My daughter who is a dentist also advises wrapping some gauze around your finger and clean your teeth with it if a toothbrush proves to be too tough on the gums.

Quick update. Some of the intense burning may be the result of thrush. I remember when our daughter had this years ago and couldn't eat or drink for a couple of days (she was an infant and couldn't suck but for the pain). So, I got another prescription that will hopefully clear that up and maybe ease up on some of the intensity.

Thanks to all for the advice as always. I'm working to incorporate a couple of new things into my routine.

Cheers!

The Hellion

Sorry to here you got thrush, unfortunately, it is all to common with this treatment. I had it four times. Diflucan works but it does take time. For me 3-4 days. The last time my ENT wrote a scrip for doxy/nystat/HC/qdrl. It a swish and spit stuff. I found it very effective and quicker than diflucan. He gave me three refills and said I could self medicate when I felt the first signs, which was burning tongue.

Kevin was on a low dose of Diflucan the entire time. Never got thrush. Just a thought.

Hellion I bought a Waterpik today based on the other comments. Brilliant. Highly recommend it.

Oral Thrush, a yeast infection or candiasis, is very common, and thrives on sugar, alcohol, yeast, so limiting them may help, and boosting your immune system since it's an oportunistic infection, not contagious, being your body can't make a balance of the naturally occurring candida in everyones bodies, that basically went out of control. Also, the usual treatment, besides home remedies, proper oral care, is local treatment with antifungals first, like the nystatin, so you don't develop drug resistance. If it goes further, it's treated systemically, usually with the zole medications like clotrimizole, flucanizole (diflucan), etc. it's easily treatable, if treated properly, if not, it can invade the esphogus (esphogitis), stomach, and go into the blood stream from there or through the gums, mouth ulcers. Once in the blood stream it's called invasive or disseminated candiasis, and difficult to treat, intraveniously, and can be deadly, up to 40%.

Probiotcs are often recommended by some doctors, some may not with a compromised immune system, like cancer, which can be dangerous some reports say, but in healthy people it may be ok.

In addition to the WaterPic, my radiation center sprayed my mouth everyday before or after radiation, and that help with the Mucocitis and oral thrush.

Ah yes, the WaterPik (TM)! I love this thing and have been using it since I started. I mix in a half teaspoon of baking soda and put it on 1 or 2 and let the water dig around in all the gums then I try to jet off any of the sore and icky bits from my mouth, cheeks and gums. Hurts like hell, sometimes, but I do get to see those lovely slimy bits of sloughs skin and blood hit the sink in tiny, satisfying little droplets!

My number one life support caregiver (my ridiculously lovely, patient, remarkably spectacularly beautiful wife) ordered the tongue scraper today -- We didn't know that existed.

As always, she's there and she's so spectacular and now she has to put up with a rather moody (if I'm honest) rather unpleasant patient. It's so not fair and I hate that I sometimes snap at her. I don't mean to take any of this out on her, but my patience is not always what it once was, and, if I'm also honest, it was never my best trait.

So thanks for all the advice. The thrush mess seem to be helping a bit, at least the Rocky Mountain Mouthwash no longer brings me to tears after my brushing/WaterPik (TM) adventures. No it just makes me whine like a puppy. Hopefully a couple of more days of the medicine and it will be more under control.

Monday is chemo round 2. Wish me luck!

The Hellion

Ditto - go waterpik. Warm water - mix in baking soda AND salt. Let dissolve and use. it WORKS

Hi Hellion,

You might want to print out your message (just above Donfoo's) and leave it for your lovely wife to "find"...

Happy Easter, brother, and I do wish you the best of luck for you upcoming second round of nobody's favorite chemo!

Bart

I got snapped at too. We understand, trust me. We cry in the shower....since we are sharing secrets..You are in this together. Sounds like she is rocking the care giver job and you are handling things as they come the best you can and that is all anyone can do.
Good luck tomorrow. Buckle up for the next week. Will be thinking about you. Write when you can!!
Kathy

OK,

Chemo 2 today and another treatment change. Given my side effects to Cisplatin (primarily severe Tinnitus which has faded but still comes and goes in severity), my chemo oncologist has determined that I am one if the not small percentage (I think I heard an estimate of 25%) of people that are incompatible with Cisplatin. We talked about it a long time, and she simply feels that the level of long-term, probably permanent side effect render that drug off the list. For my part, I think I can take the pain, but at the same time, I know that severe Tinnitus has driven real people really mad, even being attributed to severe self harm and suicide.

So...I know I won't commit suicide, but I think my cancer team isn't so sure and wants to play me with kid gloves. So there it is. Hearing loss they feel we could risk, but tinnitus, in this cancer care team's eyes, is too risky.

Please don't interpret the above statement as sarcasm, by the way. My wife and I have done a lot of research, but we are not experts. Before they made this decision, I met with another ENT, two audiologists, my chemo oncologist and I know they all consulted with my radiation oncologist.

What it means is I have been switched from 3 large Cisplatin doses every 3 weeks to weekly smaller doses of Carboplatin and Taxol (or something like that. I don't feel like digging out the paperwork they gave me again for the exact name). They feel better about the side effects and believe it will serve a similar cure prognosis. I asked about Cisplatin and they said they lean that way because it has a better clinical track record, or at least a deeper one, but that this is not unusual, and if a patient is incompatible with Cisplatin, well, then they just are.

What I'm hoping is that this doesn't jeopardize my treatment or my long term cure. I hate that I'm not in the best weapon system. That said, I guess my body isn't built for Cisplatin. Though it hurt like hell, I handled the nausea, general sort of achenes and mind numbing ringing/cotton head. The last symptoms, however, make my team of superbrains uneasy. I've seen I here that I'm not the only one that has received Carbo/tax in exchange, so I'm hopeful. I can say my chemo oncologist had no major concerns about my chance for cure.

So there you have it, turns out I really was too weak for Cisplatin.

On the up side, the treatment went well today. As before, my wife sat with me, held my hand, read her book while I slept, picked up my new srcips and generally made me feel like a very pampered guy today. As always, I'm so grateful for having her in my life!

So, anyone have any opinions? Did I get pushed out of the best because they're being too cautious or did I get moved to a solid alternative because the potential lifelong side effects are simply too dangerous? As I told my chemo oncologist -- I'll take whatever I have to to cure this filth. She assured me this will do the job. She is, like me, convinced that I walk away from this scarred and changed, but cured, so that's nice!!!!!

So far the side effects are better than the last time, so that's good. I have to go every week, though, for 4-6 hours, so that sucks. Although I whine a lot about the pain, etc, I have no intention of letting ANYTHING stand in the way of a full on cure.

I'll add more to this tomorrow - need to get some more sleep.

The Hellion

I had the Big 3 Bag Method of Cis and I ended up with permanent hearing loss. It isn't bad enough to warrant hearing aids but it is a nuisance. Remember I had my treatment 8 years ago so I hope a lot has changed at least in the doctor to patient communication but I remember telling my MO about the buzzing in my ears after my 3rd Cis and he said "I wish you had told me because I would have swithed you to Carboplatin which is just as effective but won't cause hearing loss." To this day I'm stunned by that comment.

It happens. As I said in many of my posts, chemo can mess you up sooner, worser than radiation to some extent, and is not to be underestimated. It's good your doctors were monitorng you, and switched to carboplatin, taxol, although they are all poisons, have side effects. Carboplatin will be given by your weight, I had 100mg, and the taxol may be low dose.

I had 5 days high dose TPF Induction chemo with Taxotere, Cisplatin, and 5-FU in 2009, which in one week is more chemo than is given in 7 weeks treatment. The bad part with this is once it is given you can't take it back, adjust, change, and I was one that had a bad side to it on the 6th day when I went home, and lucky to have survived, but it prevented me from further treatment, even other chemo's for years, and still suffer it's side effects, some which are permanent. The same with the three large bag Cisplatin some do not get the 3rd bag, and even the weekly cisplatin some do not complete the last one or two.

I had Erbitux and Taxotere for another treatment with radiation in 2012, and after three weeks the Taxotere was stopped due to worsening my neuropathy, anemia. You also have to watch out "hand and foot syndrome" eye infection due to blockage of tear duct with Taxotere, and is more likely to cause hair loss, thinning than Cisplatin or carboplatin do, but grows back.

My last treatment in December/January, I had carboplatin with radiation, which was easier than all the others for me.

Good luck.

Oh David, I'm so sorry to hear that. My Rad oncologist and my other ENT intimated that they feel the same way about the relative value of Cisplatin and Carboplatin but as my chemo oncologist said, Carbo doesn't have the depth hand breadth of clinical numbers regarding SCC that Cisplatin does -- Cisplatin has better clinical results and, more importantly, much much more data (according to her research) so she goes with it In healthy patients (well healthy minus the cancer) to maximize the chances -- it's aggressive, but if it works for you, you have a better (on paper) prognosis. I'm glad I let them know about my side effects, though. One thing I'm not shy about is communicating.

Thanks for the feedback!

The Hellion

Kevin also had Cistplatin and now has substantial hearing loss and tinnitus. It does get on his nerves for sure. I had ringing in my ear one day and he said "welcome to my world, 24/7." I felt bad.

I don't know if any of you reading this can appreciate the ironic humor, but I've had pretty noticible tinnitus for decades prior to getting any chemo. And then I got Cisplatin, which upped it about 50%

The irony is that my tinnitus sounds just like being all alone in a forest clearing just before sunset. I can clearly hear crickets, katydids, tree frogs and other evening, forest-settling-down sounds.

For decades, I've used my tinnitus as "white noise" to help me get to sleep!

For those suffering from tinnitus, my observation is that eventually it fades into background noise if you direct your attention elsewhere when it bothers you.

[quote=TheHellion]Oh David, I'm so sorry to hear that. My Rad oncologist and my other ENT intimated that they feel the same way about the relative value of Cisplatin and Carboplatin but as my chemo oncologist said, Carbo doesn't have the depth hand breadth of clinical numbers regarding SCC that Cisplatin does -- Cisplatin has better clinical results and, more importantly, much much more data (according to her research) so she goes with it In healthy patients (well healthy minus the cancer) to maximize the chances -- it's aggressive, but if it works for you, you have a better (on paper) prognosis. I'm glad I let them know about my side effects, though. One thing I'm not shy about is communicating.

Thanks for the feedback!

The Hellion [/quote]
That's news to me. My understand is both are quite effective if you believe they act as radiosynthesisers at all. Some don't necessary feel that concurrent chemo and rads together offer much more than just rads. Just saying, there is lots of various opinions amongst the "experts".

[quote=KP5]Kevin also had Cistplatin and now has substantial hearing loss and tinnitus. It does get on his nerves for sure. I had ringing in my ear one day and he said "welcome to my world, 24/7." I felt bad. [/quote]

I'm sorry for Kevin. The first three days following Cisplat, I had such ring as to make inking impossible. I thought it was part of the chemo hangover along with the nausea, etc, but when I described it to my doc, she kind of framed out and started sending me to audiology appointments. Apparently she doesn't feel that this is a reasonable side effect. Hope she's right!

I hope Kevin's tinnitus fades a bit. I did find it beyond distracting -- I couldn't concentrate for the better part of that week! I do know they can retrain him to better be able to ignore it so maybe he can talk to an audiologist?

The Hellion

[quote=Bart]I don't know if any of you reading this can appreciate the ironic humor, but I've had pretty noticible tinnitus for decades prior to getting any chemo. And then I got Cisplatin, which upped it about 50%

The irony is that my tinnitus sounds just like being all alone in a forest clearing just before sunset. I can clearly hear crickets, katydids, tree frogs and other evening, forest-settling-down sounds.

For decades, I've used my tinnitus as "white noise" to help me get to sleep!

Wow - you are just bad ass, man. That tinnitus is one thing I couldn't seem to deal with. It kind of made my head spin at its worst and I thought it was e hardest part of post Cisplatin. I really felt, I addiction to nauseated all the time, like my head was full of pea soup and just reeling ex whole time!n that you can treat it so easily is impressive! I Bo before you -- you really can make lemonade from lemon sludge!

The Hellion

For those suffering from tinnitus, my observation is that eventually it fades into background noise if you direct your attention elsewhere when it bothers you. [/quote]

[quote=donfoo][quote=TheHellion]Oh David, I'm so sorry to hear that. My Rad oncologist and my other ENT intimated that they feel the same way about the relative value of Cisplatin and Carboplatin but as my chemo oncologist said, Carbo doesn't have the depth hand breadth of clinical numbers regarding SCC that Cisplatin does -- Cisplatin has better clinical results and, more importantly, much much more data (according to her research) so she goes with it In healthy patients (well healthy minus the cancer) to maximize the chances -- it's aggressive, but if it works for you, you have a better (on paper) prognosis. I'm glad I let them know about my side effects, though. One thing I'm not shy about is communicating.

Thanks for the feedback!

The Hellion [/quote]
That's news to me. My understand is both are quite effective if you believe they act as radiosynthesisers at all. Some don't necessary feel that concurrent chemo and rads together offer much more than just rads. Just saying, there is lots of various opinions amongst the "experts". [/quote]

Oh I agree -- I don't think there are any final answers. What I describe is what my chemo oncologist believes and is telling me.. Far as we were able to research, Carbo has a great record too, just not as much clinical data, and maybe, just maybe, comes in a little under Cisplat, although that may appear that way because of the lower clinical numbers for SCC.

At this point, I'm comfortable with the new cocktail and to take their advice, largely because there are no definitives, but neither both seem to be applied and are considers effective.

The Hellion

I too had tinnitus for 20 years, way before cancer, and was worsened from treatment, as did my hearing, but I never went for any tests since I'm too busy with other matters. Anyway, I use a sleep machine, "sleep bug" on ipad apps, as Bart describes as "white noise" to block out the cricket sounds. Bedsides the sleep machine, a fan or air conditioner works well too. The noise is not bad in the day with all the other noises, distractions, but is more heard in the night when it's quiet. I'm kind of used to it.

Kevin works on the Artic Slope in Alaska. He is a mechanic and they are strictly monitored by OSHA. His hearing test after treatment had a very significant change so they sent him to an audiologist right away. He verified it was from the chemo, not work related, which took the pressure off his work and satisfied OSHA. He is at a point where hearing aides would help, but has heard they are so annoying he doesn't want to try them yet. Although last time he was home I found myself repeating things, often, so.....
It is a bummer, but he is alive and years out now so we'll take it. He also had Taxotere and 5fu along with the Cistplatin. This was prior to rads and with the rads he had Erbitux.

As Paul said, eventually it fades somewhat and you just naturally tune it out most of the time. With me, I have to stop and think about it, but when I do, it's always there.

To further what Paul said, you can get recordings of all sorts of nature-sounds. I like rain and so does my wife, so every night my computer plays rain-sounds when I'm/we're ready to crash (she's more of a night-owl and sometimes stays up late watching the tube in the front room.)

Hi Hellion,

I was going to put this in a PM, but thought (risky business, I know...) that it might be of general interest as well.

My take on the Cisplatin vs Carboplatin is this: no one knows for sure

It's true that the former has harsher (more severe) side effects and that the later is a reformulation that reduces the severity of the original.

Beyond that, things are murky. The reasons are several, but primarily reduce to "variability." Variability in the way the substances affect the patients, exacerbated by the variability in the patient outcomes; and variability in the experiences of different oncologists to the same (resulting in different conclusions based on the data available to them).

I don't think you will go wrong with either choice; but having made that choice, I wouldn't give the decision you made another thought, your reasons and reasoning are sound, both chemos are known to be effective.

Bottom line, I would have done what you did under the circumstances you experienced.

Best of luck to you, Hellion,

Bart

I thought there was a post with Carboplatin vs Cisplatin, which I may have shared a link with. I know there are for Erbitux vs Cisplatin, and Cisplatin weekly infusions vs 3 large bag infusions, but can't find the other. Anyway, to add to the chemo wars lol, here is some info on Carboplatin, also one mentioning combination with taxol, brief mentioning with head and neck cancer.

http://packageinserts.bms.com/pi/pi_paraplatin.pdf

https://theoncologist.alphamedpress.org/content/3/1/15.full

I appreciate that, guys. In some ways, I would have had to fight pretty hard to stay on the Cisplatin, anyway. My chemo oncologist had pretty much decided that I was not responding acceptably and that it was simply more dangerous to continue than she felt comfortable with, hence the switch. Regardless, what is done is done, and I won't look back.

In many ways, the complexity of the argument is steeped in some subtleties I don't really have the energy to research thoroughly. Instead, I will move to this regimen, I will continue to do what I can do and hope for the best and I will continue to do what I can to win this fight.

One thing for sure, though I will do almost anything to win, I am not nearly educated enough in these medicins to demand she stick with Cisplatin when she feels it will do as much harm as good.

I do wish these treatments were more absolute, although if they were, I suppose, we wouldn't all be unique little snowflakes!

Thanks for all of the input!!

The Hellion

Some of this science is not exact and it is yet to play out. So many variables, its just a moving target. The docs make educated judgements based on a lot of factors, I tend to just put myself in their hands and get their help to manage the side effects. Between that and calling on the big guy upstairs all we can do is stay strong and wait for the hand we've been dealt to play out.

Rocked the second TaxolCarbo chemo today -- going to use the new cocktail of anti nausea to offset it. Thank you to those that advised Mucinex. I added that to the regimen and am hoping that will help with the mucus based vomiting I had this weekend. Last 10 rads to go. Hoping it all looks good, no surgery is required and that we get it all with these treatments. If not, we'll take those step and make those decisions then. Right now I'm terribly internally focused on getting through my treatments - selfish, I admit, but it's what I have the energy to focus on.

Thank you all for your kind words of support, especially as the road steepens for both myself and my wife. I know she must be tiring of the entire stupid thing, but she keeps plugging away, dedicating so very much of her own strength to supporting me. I'm really quite lucky to have her -- have I told you all that? A lesser person would have bailed out with one of a million good excuses by now!

Hope the others on their journeys are traveling well. We can do this, and I know many of you, and Ozmojo in particular, are kicking ass, taking names and putting me to shame with their courage and strength. Still, I take pride in doing what I do and have done! Let's all get through this!!


Reminds me of a lyric that keeps running through my head -- I use it to invoke smiles whenever my torture team does their thing (and yes, I know they are there to help save me, but they ARE STILL a torture team ). For some reason, it plays in the back of my brain, reminding me that I get stronger, not weaker, with every treatment.

"When cometh the day we lowly ones
Through quiet reflection and great dedication
Master the art of karate
Lol we shall rise up
And then we'll make the bugger's eyes water"

These treatments are my OCF head and neck cancer karate!! Watch out enemies ours -- when we get through this, we'll be damned scary!!

OK, enough random and probably completely unintelligible thought,

Safe journeys, all

The Hellion

My mom has been rocking the taxoter and Carboplatin combo (previous kidney issues precluded Cisplatin). No hair. But no nausea. She says she'll take it.

Love your attitude! Keep getting stronger!

Indeed the road steepens. We only have two weeks to go but it feels like the summit of this mountain is still a long way off! Especially as the side effects worsen (and will continue to worsen after the rads finish).

A better analogy is how do you eat an elephant? One bite at a time. We have ten more rads to go and one chemo. After that its not treatment anymore, its recovery. We recover and start taking our lives back. One bite at a time.

Bit by bit, my friend. We're getting close, my brother! Sounds like you're holding up fairly well as well. It's tough but we're closing in on the end of our radiation and ai know we're going to make it -- maybe with tattered colors, but we will make it!

So,

Haven't been updating as much as I should. Turns out the mucus nausea is my new obstacle. The toxic phlegm is making me ill, literally. If I don't actively cough it out, it gets swallowed and drips down, etc. and makes me vomit. If I cough it out too much, I trigger my gag reflex and vomit. I swear I am the most delicate flower in the known universe!

So, been spending a lot of time mitigating those symptoms -- finally hit on some combinations of Mucinex, anti-nausea meds and a very regimented cycle of hourly hacking that means I am not vomiting (as often).

This cancer really does keep you on your toes, doesn't it? You get one thing sorted out and another thing rises up to take its place. Ah well, nearly done now. Finished my last chemo and Monday is my last radiation treatment. That's right boys and girls, as of COB today, I have 1 rad left!!!!

Let the healing begin.

Or so I hope .

Now maybe I'll be able to document and record the journey with a little more fluidity and consistency. Between staying busy, my self-care regimens, my general fatigue, and just being the lazy bastard I am, I really never did record things as I went -- I'd like to record them after, though. It's been (and continues to be) a highly complex journey -- in some ways every bit as tough as I read it would be. In others (thankfully) it has not been nearly as bad as I heard. In a few it has been a walk in the park. It's a highly individualized process, I now see, and what sucks for some does not equally suck for others.

So, that's where The Hellion stands today - i.e. still standing. Sometimes barely, and the last 2 rads may yet finish me, but I don't think so. I'm confident -- I'm going to pull through . I'll let you know the final verdict next week.

To those that continue to provide outstanding support and advice -- keep it up -- I thank you and I'm sure everyone else agrees. To those that are undergoing treatment -- let's all stay strong -- we will all get there if we believe we will. It's tough, but let none of us succumb! To those reading this and worrying about your treatment to come, I can only say that for as tough as treatment sometimes is on me, it was waiting to the start the journey that proved most difficult. It is easy to fear the unknown, and hearing the stories can be frightening - believe me, I get that - but the doing is what matters and you can and will do it. I know it's easy for me to say, but really, don't worry about the treatment to come. Follow the advice of the OCF sages and start strong and confident.

Now, let's hope my last two rads don't finish me off or turn me into a raving cry-baby or this post is going to make me look pretty foolish.

I'll leave you with a song -

One of these days I'm gonna change my evil ways
(One of these days)
Until then, I'll just keep riding on and on and on and on and on

Cheers,

The Hellion

Hard to believe it's almost over, eh? Keep that nasty stuff coming out and even consider a temporary suction machine so you don't damage any coughing muscles. That would really complicate releasing the toxic scum. It will start getting more clear as you start feeling better.

Keep on riding...on...and...on...and...on...

Hellion, I totally get what you're saying although I have had no chemo with my rads. Up till last night it was pretty trouble-free but now the nausea - mild unlike yours - is taking the edge off life.

A low point last night was when a new neighbour called in to borrow a bottle opener and I absent-mindedly opened the door without my dental plate in and with one side of my red and swollen face covered in aqueous cream.

I haven't had the thick mucous yet ... with 6 treatments to go that might be in front of me but I'll be prepared.

And taste. As someone here said, that went quite quickly in mid-week 4.

I look forward to reading your documentation of your journey. The cancer building where I get treated is like an unwritten novel ... must be full of so many heartfelt stories.