#38264 03-07-2005 02:47 AM | Joined: Jan 2005 Posts: 191 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Jan 2005 Posts: 191 | I have one more week of radiation therapy and one more dose of chemo to go through. It's been a rough road and I'm down to 104 pounds. I've adjusted to life on the PEG, but every time I pour in, I get a flem/mucous bubble and out it comes. It's painful tossing my cookies several times a day. The chemo oncologist and I both have come to the conclusion that it's not the chemo that is doing this but the long ropey mucous. I get a "bubble" and then comes the violent vomiting.
I'm a gagger by nature. As soon as I gag on flem, my stomach wants to empty.
Anyone with suggestions? In the meantime, everytime I do a feeding, I try to stay mentally positive and sit still for at least an hour. Sometimes as long as three hours afterwards I'll still get sick
I'm hoping that someone that has gone through this before could offer a suggestion. I'm trying to get the six cans of prosure down a day. It doesn't help when some of that comes up because the flem just builds. | | |
#38265 03-07-2005 09:52 AM | Joined: Jan 2005 Posts: 108 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Jan 2005 Posts: 108 | I've just read both your posts today and can see that you are really in the midst of some horrendous challenges. If my memory serves, you are a person who arms herself well with information and is not afraid to battle for what you need. Bravo to you for making it so far! I have no experience with the Iressa (but would love to learn more) but the phlegm problem is right up my alley. Many days my calorie count was practically zip due to all that thick mucous. It seemed to just bubble out of me...with the resultant nausea and vomitting. The main thing I found that gave any sort of relief was plain salt free soda water. I would sip away at that constantly through the day and night (who was sleeping then anyway?) A few cc's at a time and mostly I could keep it down and it broke up some of that thick yucky stuff. That allowed me to get some broth and slippery noodles down as I had no PEG. Keep your eyes on that that "one more week" goal...you are almost there! You know there will be a couple of rough weeks after the rads are done, but at least there won't be any additional stress placed on your stressed to the max body. We're all rooting for you here at the boards..keep typing,keep fighting. All the very best to you fellow traveler, Fran
SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05. Committed to survival with dignity.
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#38266 03-07-2005 01:08 PM | Joined: Jun 2004 Posts: 85 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: Jun 2004 Posts: 85 | I know that David had terrible phlem and he used a suction machine to get the phelm out.( just like at the dentist office) It was extremely useful. By not swallowing the phelm (which was also difficult) he was able to reduce the nausea. He sucked out ropes of it too. Our insurance paid for the portable machine and we got it from the American Supply Company located here in Atlanta. You should have something like that in your area too.
Good luck Phlem girl. Suck that stuff out! Prayers to you.
Love Brenda ( David's wife)
T1N0M0 Partial Glossectomy 2/04, Recurrance w/ another P.G. 5/04. IMRTx33 7/04-9/04. T2N2M0 recurrance in throat, 11/04. 2nd tumor 1/06/05, Chemo 1/11-05 Died 02-16-05 Wife: Brenda
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#38267 03-12-2005 02:24 AM | Joined: Sep 2004 Posts: 7 Member | Member Joined: Sep 2004 Posts: 7 | I ran into the same problems with the mucus draining and causing nausea every time I would tube feed. I was usually vomiting anywhere from 2-4 times a day. They finally got me on Zofran and Riglan every 8 hours around the clock. The Riglan helps with keeping everything moving through the stomach. In addition, I had to use a pump for my feedings. It pumps the food in at a slow rate during the night. The only problem with this is you have to sleep at a 45-degree angle to make sure it does not bubble up during the night.
SCC Stage IV base of tongue Dx 08/04. 8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, Iressa. 33 at diagnosis.
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#38268 03-12-2005 08:12 AM | Joined: Jan 2005 Posts: 191 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Jan 2005 Posts: 191 | You know, I have the liquid med that moves my stuff through my stomach faster and I also have the anti-nausea meds. It's been a couple days since that last post. I'm still flemmy. The doc did give me a prescript to get a machine, but since I'm all the way done with rads and chemo, I'm not going to get the machine just yet, I'm going to try to get through it the hard way.
So far the flem hasn't let up, but I'm hoping that I'll turn the corner soon.
Thanks for your help everybody
Jen | | |
#38269 03-12-2005 09:14 AM | Joined: Mar 2003 Posts: 251 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Mar 2003 Posts: 251 | Jen, I think the pump good be a good idea. I know that when my husband used his, he could only tolerate a pretty slow drip - or he woud be nauseous (so I can imagine how hard it would be to be pouring the fluid into the PEG). We would set the pump up at about 7:00 in the evening and it would take him until about 10:00 the next morning ot be through the 6 cans. Also, he did not get the PEG until the last week of radiation and chemo - and we ended up being really happy that he did. As I am sure you have heard many times, the effects of the treatment continue for quite some time. In his case, he got the PEG in March and wasn't ready to have it removed until August.
Best wishes to you. Anita
Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
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#38270 03-13-2005 03:30 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 482 | Jen, glad to hear you have completed the hardest part of treatment, for me anyway, which is that gift that keeps on giving, radiation therapy. Just to give you a little upbeat news, my flem problems were fairly severe as well. For the first few weeks after treatment ended, it got worse, then started to get better. As I recall, and it is good news that I really can't remember it too clearly, it was week 4-5 that I really turned a corner on the flem. So keep the faith, there is light at the end of the flem tunnel. It gets better and better as time goes by.
Regards, Kirk Georgia Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#38271 03-15-2005 06:56 AM | Joined: Oct 2003 Posts: 89 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Oct 2003 Posts: 89 | HI, can you drink liquids? try warm water, or weak tea. I find warm liquids really thin the flem and push it down.
Also, use less per can at a time (slower rate). Down to 104 lbs is pretty low, so I know you don't have a lot of "spare" weight. Maybe try fewer cans per day, or slower feed rates in the hope that what goes in can stay in.
Is there a muscle relaxer medicine that might control or limit the gag reflexes?
Just take it week by week. Rad's almost done, and will be tough for a couple of more weeks but then should be getting better.
I didn't have a PEG, but did survive on a few cans a day, or a yogurt, or a glass of soy milk. It should get better soon.
I had trouble with coughing & thick flem, cough syrup (codiene) helped me. Would it help thin the mucus for you? good luck, michelle
History of leukoplakia <2001-2004. SCC lateral tongue 9/03; left radical neck dissection & hemiglosectomy 10/03, T2-3,N0M0; 28 IMRT radiation completed 12/03. 30 HBO dives Oct-Nov 04 for infections and bone necrosis -mandible.
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#38272 03-16-2005 02:37 AM | Joined: Jan 2005 Posts: 191 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Jan 2005 Posts: 191 | I ended treatment last Friday, so I've had four days of just healing up. The flem thing is still a problem. I hate talking about gross stuff on a message board, but this is what keeps me from sleeping well and keeping weight on. I'm like a cat with a hairball... just hork hork hork until the flem comes up. I figured it's too late in the game to get the little suction machine. Afterall, if I've made it this far, maybe there's only a week or so left of the flem junk left?
I tend to make sure to curl upright for sleeping, either with the pillows in my bed or the recliner chair. Outside of living with the PEG tube the only thing I take via mouth anymore is little sips of water so I don't dry out.
I'm going to try the warm tea idea. If anything, maybe I can get some other liquids besides water in me.
Thanks for the replies.
Jen | | |
#38273 03-16-2005 05:42 AM | Joined: Jan 2005 Posts: 108 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Jan 2005 Posts: 108 | Hello Jen; You've come a long way in the past few months! Hopefully you will be able to lay back and let the healing begin. I hate the phrase "it takes time" because I think we have all been through enough when the rads are done. There really should be some lovely prize for us when we finish..I guess the hope of victory over this nasty cancer will have to be enough. I will watch for your your posts to see how you are doing. It's a darn tough go, but we're darn tough people! All the best to you, Fran
SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05. Committed to survival with dignity.
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#38274 03-16-2005 05:54 AM | Joined: Feb 2005 Posts: 7 Member | Member Joined: Feb 2005 Posts: 7 | Hello,
I did not have a PEG, so I don't know if this will help. My oncologist recommended taking Mucinex, an over the counter drug, to reduce the thick, ropey mucus and resulting nausea/vomiting. It worked fairly well. I ended up only being nauseous in the mornings after each night of build up.
7/04 SCC Stage II Tongue 8/04 Hemi-glossectomi 9/04 IMRTx33
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#38275 03-16-2005 05:14 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Jen,
Anything with Guaifenesin like Humibid or Robitussin would help thin the stuff out, along with lots of water. Even a little pediolyte in the tube would replenish some of the electrolytes with all the vomitting. Make sure you are getting lots of regular (2-3 times per week) bloodwork to keep your electrolytes balanced. Sodium and potassium issues at this stage could be fatal. The goo will last for at least 2-3 more weeks. Unfortunately, I am not the one to recommend anything for the vomitting as I spent most of my time crawling from the bed to the bathroom. It got so bad that I was screaming from the acid burning my throat for many days. I tried about every drug known to man and nothing worked very well. I could not use the PEG because about 15 minutes after anything went in, it came right back out.
Keep spitting the gunk out and soon it will get better. Just imagine Crystal Gayle singing in the background, "Don't it make your brown goo clear!" Once it starts getting thinner and clear, it will get better. I had to switch over to IV feeding (TPN) about where you are at now and for many weeks. I also had 2-3 bags of fluids through my port almost every day.
I am glad your treatment is winding down. You have reached a very important milestone. I have thought of you a lot lately and hope you are doing as well as you can right now.
Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
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#38276 03-17-2005 07:22 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Jen, I forgot a very important thing about the Robitussin or OTC equivalent. Be sure and put it in the PEG. DO NOT DRINK IT!! It will be like drinking liquid fire and will burn so much you will hate me for life. I am really sorry if you have already tried it . Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
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#38277 03-17-2005 05:40 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Jen, I also only took sips of water from about week four of radiation on. I kept a water bottle with me at all times. I remember the mucous starting to dry up around week three after radiation ended. How are the kids doing with it all? Hang in there. Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#38278 03-19-2005 08:58 AM | Joined: Jan 2005 Posts: 191 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Jan 2005 Posts: 191 | Kids are handling things as well as can be expected. Really, they just don't go to as many martial arts classes as they would if I weren't sick. That's a small sacrifice. I'm amazed that my spouse has taken over the stuff that I normally use to do... the meals, the grocery shopping and the driving the kids to lessons etc. I think he's got a whole new respect for what I've been doing the last 15 years of marriage. The "behind the scenes" stuff he didn't realize was so exhausting or time consuming. He's also having fun because he's having to do more with the kids.
The flem is really bad in the mornings. I'm down to 104 pounds, but I'm holding steady. I try to work in the PEG feeding for when I've yakked myself out between attacks. I'm just so weary of being on my knees trying to get some stuff I really don't want to see out of me.
I'm going to be a sport and give it more time to let up. I just wish I had a "feel good" point. Half the time I'm surprised I made it this far, but man.....I'm not about to take feeling good for granted anymore.
I just wish I could predict a day that I can say "hey.. I feel good"
Maybe that will come in a couple months.
Jen | | |
#38279 03-20-2005 02:21 AM | Joined: Feb 2005 Posts: 1 Member | Member Joined: Feb 2005 Posts: 1 | I came to the forum today hoping to find some ideas on handling the problem with the heavy mucous. My companion has just completed 4 weeks rad and is currently having a difficult time with this problem. Thanks to all for your postings/ideas. I will suggest them all. He did try OTC cough med and made the mistake of taking it by mouth -- lesson learned..
Companion - SCC Stage III tongue, Diagnosis 1/05, Radiation/Chemo therapy
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#38280 03-21-2005 06:29 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Jen,
Soon you will stop at the end of a day and say exactly that..."hey...I feel good". You will have a lot of bad days mixed with a few good days and before you know it, you will be having more good days than bad days! Hang in there and look ahead to the light at the end of the tunnel. It is just around the corner.
Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
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#38281 03-21-2005 06:31 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Val,
Don't forget the obvious...humidifier at night (or all the time when the heater is running), propping up the head to prevent choking, coughing the goo up as often as possible and keeping the mouth and throat a little damp with water.
Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
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#38282 03-21-2005 07:31 PM | Joined: Jan 2005 Posts: 10 Member | Member Joined: Jan 2005 Posts: 10 | Jen,
you brought back a memory!! The lovely rope of phlem! My one tip for the coughing so hard you make yourself vomit....open up your peg tube. It was easier than throwing up via your mouth. And it stopped the gagging. My other suggestion is drinking more water. I do remember just being able to literally pull out a rope of phlem.
Try the peg tube open in the sink, it helped! I went thru chemo and radiation with a three year old so my heart is thinking of you!
C | | |
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