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[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


My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
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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


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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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.


Laura, 45 yrs old. HPV +16, stage 2, no lymph nodes-right tonsil.
6 cisplatin chemo, 35 rads.
Diagnosed Nov 2013, port/feeding tube 11/26, started treament 12/10, completed treatment 2/4/2014.
Lost taste 12/24, lost ability to swallow at rad # 23.
Port removed 2/27, Peg removed 3/6.
4/3-No saliva, most everything taste awful but making myself eat-HATED PEG TUBE!
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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


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
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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


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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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


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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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 :-/

Last edited by BrianPK; 04-05-2014 07:03 AM.

Brian
Stage IV TxN2aM0 HPV+ SCC 38 y.o. male
9/20/13 Sentinel Node Found
12/5/13 Start of 72Gy and 5 bags of Cisplatin
1/21/14 Treatment Ends
1/25/15 1 Yr clear
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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!"


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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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 smile.

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. smile -- 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! wink

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
Joined: Oct 2011
Posts: 805
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You rock!!


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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