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#194236 - 04/24/17 10:44 PM Struggling  
Joined: Apr 2017
Posts: 34
cougardad62 Offline
Contributing Member (25+ posts)
cougardad62  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 34
Ok soon to be on week 4 with Chemo and rads. I have gone from 244-229 in three weeks...fortunately I have some to give. I just can't eat well. No desire to eat. Started PEG feedings this past weekend with Boost. So hard to swallow and I keep hacking up thick mucous stuff. Any suggestions would be nice....

#194237 - 04/24/17 11:14 PM Re: Struggling [Re: cougardad62]  
Joined: Apr 2017
Posts: 16
Elainy Offline
Member
Elainy  Offline
Member

Joined: Apr 2017
Posts: 16
New Jersey
hello Al,
I'm so sorry to hear of your discomfort. I remember the feeling. Why don't you check in with your medical supply company for a SUCTION MACHINE. I rented it. It was very helpful to me. I remember out of all the things that drove me nuts it was the MUCUS uggh But having the suction machine was very valueable. It wasn't expensive to rent. ANd whenever I was feeling the abundance of mucus I would use the machine. Also, I know the feeling of NO INTEREST in eating. But DONT STOP. you definitely need to stay on your nutrition by using the PEG TUBE....but SWALLOW, SWALLOW, SWALLOW...what flavor are you using with BOOST. I LOVE THE VANILLA. I use Walgreens Brand of Vanilla. I would blend the vanilla with Maple Oatmeal and a BANANA ohhhhh baby was that delish. TRY IT. Even my kids would have that with me....Let me know how you make out


SCC 5/21/09 Base Of Tongue, Stage 4-age 42
5X Cipltn, 37 IMRT end 9/09
10/09 neck disection- 2nd Feed tube instal
2/11 Tracheostomy-
2/12 - 2/13 over 25 Diolations
2/14 Total voice loss
2/15 Total Laryngectomy Researched
2/16 Jaw bone starts to deteriorate TL put on Hold
6/16 30+ HBO dives
Annual PET shows NED until the hot spot lights up the jaw bone
1/17 Jaw Replacement research
#194239 - 04/25/17 01:29 AM Re: Struggling [Re: cougardad62]  
Joined: Oct 2012
Posts: 854
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 854
Toronto, Canada
Hi Cougardad,

The pain you experience swallowing is par for the course for this point in your treatment. My husband couldn't even have a sip about the middle of the third week. The RO recommended doing dry swallows to keep the swallowing function intact. Also, do your swallowing exercises everyday. They are very useful. My husband could not swallow for a long time because of scarring but he continued to do his exercises. When his esophagus was finally opened, he was still able to swallow. I hope that tells you how valuable the exercises are.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
#194244 - 04/25/17 11:07 AM Re: Struggling [Re: cougardad62]  
Joined: Apr 2017
Posts: 16
Elainy Offline
Member
Elainy  Offline
Member

Joined: Apr 2017
Posts: 16
New Jersey
HI me again,

I just read GMCRAFT response to you and YES "exercise" is so very important. I will admit. I was bad and I never did my exercises. I believe a lot of my problems come from not listening to the P/A

Good Luck


SCC 5/21/09 Base Of Tongue, Stage 4-age 42
5X Cipltn, 37 IMRT end 9/09
10/09 neck disection- 2nd Feed tube instal
2/11 Tracheostomy-
2/12 - 2/13 over 25 Diolations
2/14 Total voice loss
2/15 Total Laryngectomy Researched
2/16 Jaw bone starts to deteriorate TL put on Hold
6/16 30+ HBO dives
Annual PET shows NED until the hot spot lights up the jaw bone
1/17 Jaw Replacement research
#194245 - 04/25/17 12:10 PM Re: Struggling [Re: cougardad62]  
Joined: Jun 2007
Posts: 9,680
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,680
PA
Al, I know you are at the point where this is beginning to get pretty hard. You are starting to get hit with the horrible side effects. I know how bad this feels, I went thru too.

Focus on what is within your control.... your intake. Losing weight is NOT a good thing during treatments. Even if you have a couple extra pounds to lose, this is not a good way to lose them. By dropping significant amounts of weight you are also losing muscle. Fifteen pounds in 3 weeks also says to me you are not taking in enough daily. PLEASE!!!! turn this around right away and take in more calories. Make it a goal to hit at least 2500 calories every single day. If you were doing 2500 calories every day and still lost 15 pounds in 3 weeks then you need to take in higher daily calories like 3000 or even 3500. I know it sounds like alot but when someone has cancer their metabolism burns up calories at a higher rate trying to kill the cancer and repair itself. Soon you will begin to get worn our easily and want to sleep more, this is another result from rads and also from not taking in enough calories. I nag everybody about this because I suffered greatly by becoming malnourished and dehydrated. This made everything so much more difficult than it should have been. It also earned me a few hospitalizations which I did NOT like, especially when they wheeled me right down to the radiation lab for treatments anyway. If you are struggling to get enough water in daily (48-64 oz) then talk to your doc and ask for a prescription to get extra hydration. After a couple bags of fluids you will feel so much better. Many patients make this a routine and get extra fluids every other day.

If you are using a PEG tube didnt you see a nutritionist or talk to your doctor about it? You should have been given formula that comes in cases from a medical supply company. You would get everything you need including syringes, drain sponges (fits around the feeding tube to absorb any leakage), and tape (ask for paper tape). Its also much cheaper than buying formula at the store or online. Plus patients usually get a pump so they can do feedings overnight while they sleep. You wake up feeling much better after taking in a few cans overnight. Just make sure you prop yourself up on extra pillows or somehow raise the head of your bed several inches so you are on an incline and not lying flat (can cause aspiration of the formula). If you did not get all of these things tell your nurse and doctors when you go to your next rad appointment.

To be honest, this is not easy but you can get thru it. Pay more attention to your intake and you will feel much better. Try your very best to take in more formula every day. Without upping your calories and keeping them at a higher rate you will have a harder time of this. Rads are cumulative too. This mean everything will get more difficult as treatments continue. The very worst of it is the first 2-3 weeks after you finish rads. Radiation continues to work even though the treatments have ended. The only way to make it easier is to turn your intake around and get more. I almost forgot... if you are in pain make sure to relay this to your medical team too. Often rads can turn into a very painful experience. I was on some pretty strong pain meds when I went thru it. Dont wait until it gets really bad before you say something. It has been proven being in pain does not help patients at all in fact its harmful to patients, making everything so much harder on them.

I know its rough and I feel so bad for what you are going thru. It will get better but unfortunately this is all part of the process to eliminate the cancer. Hang in there!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
#194248 - 04/25/17 03:56 PM Re: Struggling [Re: cougardad62]  
Joined: Sep 2016
Posts: 103
bjmpittsburgh Offline
Senior Member (100+ posts)
bjmpittsburgh  Offline
Senior Member (100+ posts)

Joined: Sep 2016
Posts: 103
Cougardad -

Get some ISOSOURCE and start pushing it through the pump. I do 9 boxes per day at 3375 cal. Takes some time but I can maintain my weight at 250+/-. Do this now. The downward spiral of weight loss and the ability to withstand current and near future treatments is a tough one to break out of.

Personally, I would recommend the unflavored "feed". (My term) The unflavored is a bit easier to deal with when you have to vomit. But, if your a glutton for punishment, it comes in vanilla also.

Set your pump at a rate that will provide the feed in a manner that will not introduce additional distress to your system. (Too fast and sometimes you'll end up with a bloated / sloshy feeling similar to drinking to much water. That could also lead to vomiting.)

You also need to consider how painkillers impact how your bowels process waste. (Opioids slow down the process.) The worst is when you keep pumping the feed in AND your constipated from the pain meds. (Highly recommend using laxatives to reduce the potential for adverse impacts due to constipation.)

The thick mucus is something that I still struggle with daily, although the volume has reduced over the years since surgery.

The next six to ten weeks will test your resolve. Keep focused. Try to take in and hold as many calories as possible. Rest / sleep when you're tired, (and even when your not.)

Good Luck


1997 SCC Tumor on tongue - Partial Glossectomy
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Glossectomy
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-glossectomy
Free Flap reconstruction from thigh
PEG Tube inserted
6 weeks radiation
Trisimus
Pump Feed
Permanent Issues with speech and swallowing

#194259 - 04/25/17 11:59 PM Re: Struggling [Re: cougardad62]  
Joined: Jul 2012
Posts: 2,976
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 2,976
NYC
Cougardad,

It gets more difficult now, and a few weeks after treatment. Your doctors start getting concerned when you lose more than 5% of your weight unitentionally, which can have a negative impact. Most of the weight loss is muscle, especially skeletal muscle, some fat too, but it may be hard to regain due the metabolic effects of cancer. I was about your weight, 245lbs in 2009 going into treatment, and went down to 120lbs in a months time due to cachexia. I've regained some weight, lost and gained again, and about 164lbs now.

Treating any mucucocitis, thrush, pain, dry mouth, mucous, nausea or vomiting, may make eating more tolerable, limit weight loss.

Marinol, a prescription medicine, can help with nausea, and help increase appetite, as well as caffeine, fat/sugar type foods, if you can tolerate it. There were times I just used the peg tube, and slept. Sleeping also helps with recovery. They say light exercise such as walking may help too to increase the appetite, clear the mind, but at times I couldn't even do that, but just remember, it does get better over time.

Good luck


10/09 T1N2bM0 Tonsil
11/09 TPF IC 6 Months Hosp Tx Stopped
01/11 35 IMRT 70Gy 7 Weeks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap Graft IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Segmental Mandibulectomy Fibular Free Flap
04/17 Regraft hypergranulation Donor Site
06/17 Myocardial Infarction






#194260 - 04/26/17 12:24 AM Re: Struggling [Re: PaulB]  
Joined: Apr 2017
Posts: 34
cougardad62 Offline
Contributing Member (25+ posts)
cougardad62  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 34
Thank you all so much! My doctor said I was doing quite well at this point in my treatments. I am using the PEG 80 % of the time! Yes concern about the weight, but I am battling and very positive! I am glad I found you folks!

#194263 - 04/26/17 01:48 AM Re: Struggling [Re: cougardad62]  
Joined: Apr 2017
Posts: 61
Stef H Offline
Supporting Member (50+ posts)
Stef H  Offline
Supporting Member (50+ posts)

Joined: Apr 2017
Posts: 61
San Jose, California
I am going to start radiation in June or July; just wanted to say I am sending you strength CougarDad and want to thank everyone for sharing their experiences.

Stef


Keep fighting friends!

Me
Age 48
SCC diagnosed 3/7/2017
Staging SCC HPV+ T0,N1 primary unknown
PET 3/16, no activity, biopsies 3/23 benign
TORS surgery identified 2mm tumor in BOT (vallecula)
Cancer restaged T1, N2, M0
Begin 30 sessions of radiation (60 Gy) 6/13
Completed radiation 7/24/2017
#194274 - 04/27/17 12:06 AM Re: Struggling [Re: cougardad62]  
Joined: Jan 2013
Posts: 79
Nancy14 Offline
Supporting Member (50+ posts)
Nancy14  Offline
Supporting Member (50+ posts)

Joined: Jan 2013
Posts: 79
Massachusetts
Hi Cougardad62,

I hit the beginning of swallowing pain and loss of appetite just about the same time as you (week 4); I also started unexpected vomiting from time to time, so I had no desire to do have anything to do with food. I had opted to not have a PEG put in beforehand, but after losing 5 pounds almost overnight (from my starting weight of 105 lbs), I asked for and quickly got the PEG inserted and started faithfully with that. The PEG feedings helped my weight to stabilize - pretty much giving up on any caloric intake by mouth. I did a LOT of dry swallowing but really nothing more than that or a very occasional sipping of water (still painful). If I did it again (and am not volunteering), I would rely on the PEG but also FORCE myself to swallow something more than water sips because I had narrowing of my throat (esophagus?) and ended up having four dilations after radiation was complete. The issues didn't start until about 2 months after radiation (I still had the PEG). I had developed strictures in my throat that got thicker, restricting foods from passing. I had my radiation treatment at a local hospital but was followed by specialists out of Mass Eye & Ear. If I had my radiation at Mass Eye & Ear or Mass General, they would have forced me to swallow at my radiation appointments to make sure strictures didn't develop. Of course I learned that after the fact. It may not happen in your case or others, but it is a take-away for me from my experience. I've thought about it a few times and my plan would be to load up on pain -relief beforehand, let it start to kick in, force myself to eat something and then hopefully have relief and sleep after. (How's that for planning?)


You are in the rough patch and will continue for a while. You have our support; you can do this! :-)


Nancy
Age 56 at diagnosis
Neck Lymph node removed 11/2012
Tonsillectomy perfomed 12/2012 - identified as primary
SCC Left Tonsil with Left Node involvement, DX 12/2012
RX started 1/29/2013, finished 3/23/2013;
Daily IMRT (35 Sessions)
Weekly Taxol/Carboplatin (6 weeks)
PEG placed after week 4 (3/1/2013)
PEG removed 6 1/2 months later (8/12/2013)

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